Erica

31

2010-06-04T00:00:00.000-04:00

Happy happy birthday, Erica Jean!

Documentary Short

2009-09-06T10:52:00.002-04:00

Dear All,

Please find below a link to the documentary short by Naomi Ture, Chris Faber, Nick Davila and others that have contributed to its creation.

http://www.reelchanges.org/projects/show/1cbcd6c0-78f4-012c-76eb-005056c00008

A message from Naomi:

Thanks to the support of friends, family and donors, we are making finishing touches to A Perfect Donor. This 6-minute piece aims to encourage minority viewers to donate their bone marrow stem cells through a connection with a passionate and driven young woman living with leukemia. The short is intended for distribution online and through bone marrow drives and educational events.

We're fundraising for the feature documentary, Laughter in the Wind, which will bring more intimacy to the issue, affording the audience the time and space to experience, reflect on and absorb the deeper existential issues and transformative power of Erica's journey. With a broader audience, we hope to compel viewers to take action.

photos

2009-08-31T21:58:00.014-04:00

I find it hard to believe that it has almost been nine months since Erica was alive... As time goes, I miss her face and voice so much. I thought it might be nice to share a few pics I came across while backing up my computer... Videos of us together and pictures of her laughing seem to help me when I'm feeling low and get me through a little bit longer... I hope the following photos make you smile too.
Peace,
Jaci

Happy 30th Birthday, Erica!

2009-06-04T09:11:00.007-04:00

Today is Erica's 30th birthday, a milestone that she should have reached and had the pleasure to celebrate with her loved ones. And for those of us who did have the pleasure to know her well, can you even imagine how big and festive this party would have been?? Certainly there would be dancing, laughter, drinks and lots of food from around the world! I can hear her voice saying, "the more the merrier" (as she frequently did!) and I think she would have wanted every friend she ever had to know they were welcome at her party.

It's funny because I have been so hesitant to blog. I remember her nagging at me over and over again to blog for her because she was too tired to write and she didn't like huge gaps of time between postings... But now, it doesn't feel appropriate to speak for her on this site that has evolved into her amazing journey and the place that allowed her a chance to process her thoughts and feelings. I don't want to make assumptions about what she would have done had she lived, who she would have become, what paths she would've chose... Nor should anyone try.
She was full of surprises and my favorite were her birthday surprises!! When I was 14 years old, Erica threw a surprise dance party in our garage for me (still my favorite birthday memory!) to each year as adults doing something together and new, I always looked forward to celebrating the marking of another year with her.

So this year, on her birthday, I am proud to announce that Erica Jean Murray has earned her Master of Arts from Tufts University!!! I always bragged that my sister was a smarty pants, but to earn her Masters while undergoing chemotherapy, radiation, steroids, and a bone marrow transplantation--she's a rock star!

I also just graduated with my Master of Science in Social Work and the day was bitter sweet.... She asked me not to return to California when she relapsed the last time because she said that it was motivation for her to get well fast and be cheering for me when I receive my diploma... This degree was so much for her and with her that it was difficult to accept it without her physically present--but when I heard my name called, I walked across the stage to cheers from our amazing Mother, Linda, Andres, Jamie and my friends... so yea, I was smiling from ear to ear and in those little moments, I guess she is there and I do feel her...

So, HAPPY BIRTHDAY to you, Erica! Thank you for all your love and support, even now...

Keep on celebrating

2009-03-01T13:54:00.005-05:00

Once again, Erica continues to touch lives even after she's gone. Below is the email from Dean Sheehan of Fletcher School at Tufts University where they, too, will be hosting a service to remember Erica. Please note the highlighted paragraph: I am so proud of the Fletcher community for not only remembering Erica, but for continuing her message of awareness and hope for anyone in need of a bone marrow donor.

Last night, Andres and I had the honor to attend the Black Tie & Black Jack fundraiser for the Leukemia and Lymphoma Society NYC. It was inspiring that over 600 people were there showing their support to find a cure for blood cancers, even in this current economic slump. There were tables with black jack and roulette, drinks and hors d'oeuvres, and all proceeds went to the Leukemia and Lymphoma Society. A group of dancers known as the Cancer Dancers (http://www.hopeandheroes.org/CancerDancers/) performed to a cheering crowd. The night was amazing.

This is a picture of Gayle Silverman (beautiful in blue along with her family), Andres' patient, who organized the whole event last night. She was diagnosed with AML at 21-years-old and begged him during her induction phase to let her go home and die. He refused to let her give up. Last night at the party, she gave a speech and specifically thanked Andres for saving her. The spotlight found him and everyone cheered. It was amazing and I was beaming with pride!

Erica is so present in every day of my life, my mom's life, her friends' lives... While I can only speak for myself and admit that I struggle frequently with sadness at her absence, I can also say that I feel her strength propelling me forward. Thanks for still keeping up on this blog with its occasional postings. It seems silly to continue to write, but Erica continues to motivate and inspire--what can I do??

With love, Jaci

************************************************************************************

Dear Members of the Fletcher Community,

Erica Murray, Fletcher MALD candidate, held a special place in the hearts of many at Fletcher. Her death in early December deeply impacted those who knew her and the many who knew her only through her blog, her Follies video, through discussions with those who did know her, or through other indirect contacts. Her vitality and optimism in the face of daunting health challenges moved us all.

We will hold a Celebration of Life for Erica Murray on Friday, April 17^th at 3:30pm in ASEAN Auditorium with a reception following in the Hall of Flags. The Celebration will include music by the Ambassachords, readings and reflections by a few of Erica’s friends, and a few words from Erica’s sister, Jaci. Erica was someone who thrived in the diversity and vibrancy of Fletcher and was committed to building community and understanding, and all members of the Fletcher community are welcome, indeed encouraged to attend, whether you knew Erica personally or not.

While a few of Erica’s friends will speak at the Celebration, we know that many of you have memories of Erica, amusing anecdotes, telling insights, or a simply a fond remembrance. We would like to collect these memories to present to Jaci at the Celebration and we will try to select a representative sample to read at the Celebration. If you have an Erica memory or an Erica story that you would like to share with her family, please send it to Sarah Strong (sarah.strong@tufts.edu).

We also intend to project a photo slideshow at the beginning of the Celebration. Many of you have photos of Erica. Kindly send them to Sarah Strong as well.

Finally, students have expressed an interest in institutionalizing Erica’s memory at Fletcher. After consulting with Erica’s family, we have decided to hold an annual Erica Murray Bone Marrow Drive at the School. Christina Sass has kindly volunteered to organize the drive this year. She is still working out the details with the National Marrow Donor Program and we will be in contact with you shortly regarding the details.

Do send us your photos of Erica and your anecdotes and memories. Thank you.

Sincerely,

Gerard F. Sheehan

Executive Associate Dean

Also, please also feel free to pass this invitation along to Fletcher alumni and others who may wish to attend.

Celebrating the life of Erica Murray '01 - Friday, January 30th, 4:00-6:30 p.m.

2009-01-22T15:07:00.002-05:00

Hi Everyone,
Erica's alma mater, Occidental College will be hosting an event in Erica's honor on Friday, January 30th at Occidental College. This event is open to all of Erica's friends and family, regardless if they have any connection to Oxy. Please see the letter of invitation below for more details. If you would like to attend, please either respond via e-mail at alumni@oxy.edu or call the Alumni Office at 323-259-2601.

Hope to see many of you there!

Jamie

Dear Alumni and Friends of Erica,
As many of you know, the Oxy family suffered a huge loss on December 4, 2008 when Erica Murray '01, former assistant director of alumni relations, passed away in Menlo Park. Because Erica's passing has touched so many in the Oxy community, and because there is so much to celebrate about her wonderful life, the Alumni Association will host a special Celebration of Life program for her. Please join us when we will come together to celebrate Erica's life and to give thanks for the many gifts that she was able to share with so many members of the Oxy family. Whether you knew Erica personally and counted her as a friend (and was there anyone she ever met who did not immediately consider her a friend?!) or only knew Erica through her blog (http://ericamurray.blogspot.com/) or from the story in the alumni magazine, we hope that you can join us on Friday, January 30 in Keck Theater. We'll begin with a reception at 4:00 p.m. in the lobby and then, at 5:00 p.m., we'll move into the theater for a short program when we will celebrate Erica's life, share some happy memories and give thanks for the amazing life that she led. We have also made arrangements for the Oxy flag to be flown at half-mast on Friday in Erica's honor. So that we can plan properly, we'd be very grateful if you could please let us know by Tuesday, January 27 whether or not you plan to attend. Simply reply to this email message or call the Office of Alumni Relations at 323.259.2601. We'd also be grateful if you could please forward this email on to other people that would like to attend so that as many people as possible will know about it. We look forward to the possibility of seeing you on Friday, January 30 at Keck Theater.

With best wishes.
Jim

Fundraising for Erica's Documentary

2009-01-08T22:39:00.005-05:00

Many people have asked me how they can help during this difficult time. Although I'm not sure there's much anyone can do in the way of easing the sadness, I will admit that everyone's support and love makes me so proud that even after Erica's death, she still manages to touch so many lives.

There is a family that lives in Sacramento, CA that was touched by Erica story without ever personally meeting her. They have decided to host the aforementioned fundraiser that will directly benefit the documentary that Naomi and Erica worked on together. Now, Naomi will continue the project to its fruition, but is asking for help from anyone who is able to donate to the cause.

Please click on the picture above to enlarge the text.
If you would like to donate, please visit: http://www.globalnarratives.org/donate.html
Feel free to explore their blog at: http://www.wucrew3.blogspot.com/

With so much love,
Jaci

Eulogy by Jamie Murphy

2008-12-11T20:26:00.000-05:00

"Hi Everyone,
When Jaci first talked to me about doing this, my biggest fear was standing up here before you and not being able to get these words out. But after Erica passed, my fear changed. I wasn’t nervous anymore about standing here and crying, I was nervous about finding the right words. It’s enough pressure for anyone to eulogize their friend, but to do it for a woman who always had the right words – whose eloquence, creativity and wit were evident to everyone she came in contact with – is a truly daunting task. Whenever I was at a loss for words, whenever I needed help with grammar and punctuation, whenever I needed a Scrabble triple-word-score worthy word, I always turned to Erica. And here I am now, left to my own devices, so E . . . let’s hope you taught me well. Here it goes.
Erica, E, EJ, Murray 1, Reekie, Beek and always her favorite . . . Erica…names for an extraordinary woman who I have always been, and will forever be, so honored to call my best friend. [Note from Jamie: The former “Erica” is pronounced the way Erica pronounced her name (with the emphasis on the 2nd syllable), while the ladder “Erica” is pronounced the traditional way (with the emphasis on the 1st syllable). Clearly, the joke loses something when reduced to writing!] I could stand here before you today and talk about Erica’s compassion, her intelligence, her sense of humor, her smile, her sparkling eyes, her incredible love for her family and friends. But these are things you all already know. So my job now is to tell you a few things about Erica you may not know.
Like how Erica’s closest friends throughout her life were just the right combination of alike and different. Erica was one of those very rare and special people who enjoyed the company and friendship of people who didn’t always share her views or who said things she would never say herself. For instance she often times left it to me to make an inappropriate, politically incorrect joke while she laughed and shook her head at me all at the same time.
Or how, before her days of hob-knobbing with other over-achieving, international do-gooders at Fletcher, Erica was a rugby-playing English major at Oxy. And before that, she graced the halls of St. Joseph’s Catholic School in Santa Maria where she swam, was homecoming princess, and worked at Hot Dog on a Stick . . . oh that’s right . . . Hot Dog on a Stick . . . sorry E.
Or how she’s a canuck! That’s right, she was born in Canada. Her Mom Judy lovingly described Erica’s birth on the blog that Erica kept as a way of sharing her journey over the past few years. In the post written on Erica’s 29th birthday, Judy wrote of her baby girl:
“At precisely 7:47, 29 years ago, the sweetest most beautiful baby girl arrived in West Vancouver British Columbia. She was the cutest little baby weighing in at 6lbs 10 oz with the most engaging smile ever. Today, this same lovely little baby has metamorphosized into a wonderfully strong, intelligent, inspiring and beautiful young woman.”
Another thing you may have not known about Erica is that her favorite city in the world was Paris. Up until about a year ago, she always said that she didn’t have a favorite city, but sometime recently (and I think I know why), that changed, and she said she knew that she would always feel at home there. So, the next time you are in Paris, please think of Erica. Visit a museum for her. Sit at an outdoor café, sip espresso, and people watch for her. Try speaking French at the risk of being laughed at . . . and when that happens, laugh too because you know Erica would have been proud of you.
Erica once said to me that she felt like she was a jack of all trades but a master of none. She knew she was talented and creative but didn’t feel like she excelled at any one thing. But I beg to differ. Erica was truly a master of human relationships. She had the most amazing ability to make everyone she came in contact with feel like her best friend. And she made friends to the very end. She was naturally the most welcoming and friendly person I have ever known, and she brought together people from around the world as her friends. Very shortly after Erica was first diagnosed she created a top ten list of the best things about having cancer . . . leave it to Erica to find the bright side of having cancer ;) The number one thing on her list was bringing her loved ones together. She said: “I love it when people from different segments of my life have the opportunity to meet and get to know one another. Jamie called it my ‘elf on the wall’ trick (the joke sort of deriving from me being the obvious elephant in the room, but trying to be like a fly on the wall), but many hours of each day were spent in a semi-snooze listening to my Mom get to know my friends, or my sister get to know my graduate school colleagues, or a friend from Japan getting to know a friend from high school. I loved just listening to their precious voices and knowing they were there.” And Erica has accomplished this more than she will ever know. I realized yesterday that while I may have lost my best friend, I have gained another mother and another sister in Judy and Jaci.
To my Chinese mother Judy, thank you from everyone else who loved Erica for not only caring for her, but for us too. You shared your little girl with so many people, and we will forever be thankful to you for that gift.
And to Jaci…I know Erica told you constantly just how she felt about you, and I could go on and on about her love for you, which was clear to anyone who ever saw the two of you together. But I’m not going to, because it was SO evident to everyone in this room and because, honestly, I don’t think either of us could handle it. So all I am going to say, one last time for Erica, is “big wing.”
A few days before Erica passed, an anonymous Oxy staff member wrote one of the most beautiful posts I have read so far. The part that touched me the most was about Erica’s smile. The post read: “Her ability to take us along on the tragic and cruelly unfair journey she has been on these past few years, with grace, dignity, intelligence and humor is truly amazing. It speaks volumes about her strength, and her inner beauty that is matched so completely by that radiant smile she so often beams. I think it is her smile, immediately engaging, immediately inviting and immediately warm that radiates and gives you a sense of comfort in her presence. In Oxy staff meetings I would often look across the table and see that smile, matched equally by her intelligence and enthusiasm, and I would think to myself - wow, she is something.” I don't think I have ever known a more beautiful smile. I hope that none of us will ever forget that smile…I know I never will.
A week before Erica went into the hospital for the last time she asked me what I thought would happen to her after she passed away. At the time I gave a basic and reassuring answer in an effort to calm her and ease her fears. But when I think about it now, I like to think that Erica is now forever enjoying what would have been her ideal day here on Earth. She is with her Mom, Dad, Jaci, and Linda. She is surrounded by her aunts, uncles, cousins, and countless friends. Her days consist of a rotating schedule of crossword puzzles, card games, group reads, yoga, political debates and dim sum. Barak Obama is President for eternity, and not recycling is a crime punishable at law.
It was clear to me from very early in our friendship that Erica had a special combination of compassion, integrity, sense of humor, strength, morality, and world consciousness that very few people have. She made an immediate and lasting impact on whomever she met and encouraged those around her to strive to live life to the fullest.
Erica taught us all many things over the past few years. One of the things that I am most thankful to her for is teaching me the true meaning of the word “selfless”. I saw it everyday that I was with Erica. She was by far the most selfless person I have every known. She would do things for other people no matter how badly she didn’t want to just because she knew it would make them feel better.
One last thing that I want to mention was her sense of humor. The girl knew how to tell a joke, was always quick with a great come-back, and could find humor in just about anything in life. This was evident in most of Erica’s blog posts. The blog was created to give Erica’s loved ones updates on her health and treatment but quickly took on a life of it’s own. Some of her more creative and humorous posts over the past two years were her December 2007 “12 Days of Cancer” post and, my own personal favorite, her October 2008 missing I-phone post. My favorite part of that post being: “The search for the missing iPhone has been conducted in a professional and thorough manner. Amber alerts have been issued on the 101 and 280 freeways. Digital Voicemail-sniffing dogs scoured the patient units, the 3rd floor VIP room, the cafeteria, and the radiology ward, places EJ's Mobile's owner has frequented lately. As each hour passes, the owner has less hope that the mobile device will be found intact. ‘I have had it for about a year and half,’ the owner, who wishes to remain anonymous, said. ‘I'm not sure how I will be able to fill the hole its absence has left in my purse.” The girl was funny!
Over the past few days I have been looking over old blog posts, e-mails, and letters from Erica, searching for some of her words. As you can imagine, I had an endless supply of poetic passages from Erica that I could have shared with you. But the words that I have chosen aren’t necessarily the most poetic, but the most poignant. In an e-mail from her to some of her closest friends on January 13th of this year (two weeks before she relapsed) she said:
“The first year of treatment was awful, the only specks of sunlight being the love you all showered on me. 2007 was a year marked by growing strength, growing hair, growing happiness. While undergoing treatment, I completed one year of my master's degree and managed, despite my family's and doctor's worries, to still do some of things I love, like traveling. Still, I'm not sure I can remember what it's like to be 100% pain free, to not be anticipating the next invasive needle, to not know which of the cocktail of drugs I'm on is causing today's particular pain. My optimism for 2008 is severely hedged by cautious anticipation of lingering side effects and, of course, relapse concern, but I still think that getting this far is worth a bit of a celebration.”
So that is what we will do for you today, my dear. We will celebrate your life, our love for you, and your love for us. We will laugh and smile and cry in your honor, and we will do it knowing how much fun you are having watching us. We love you, we miss you, and we will forever be better because of you. I love you E!"

I will miss you, Beek.

2008-12-05T19:42:00.002-05:00

Last night, December 4th, 2008, at 11:35pm, Erica Jean Murray passed away. It was a calm and peaceful moment... she simply took a few deep breaths and fell asleep. We held her hands, stroked her face, whispered our love and hope for her to find peace...

The last week has been a beautiful and natural progression of tears and laughter, memories and hope... I am confident that her spirit will never leave us.

There is one moment in particular I would like to share... Yesterday afternoon, we were able to wheel Erica's entire bed outside into the garden to enjoy the sun and perfect California weather. We sat with her for nearly two hours and I'm certain she enjoyed this.

The funeral will be held Tuesday, Dec. 9th at 10:00am at Our Lady of Mt. Carmel Church (400 Fullton Street, Redwood City, CA). After the service, we will have a Celebration of Life at our dear friends' home, The Wang's (214 Olive Hill Lane, Woodside, CA). The Celebration will follow after the church service until 4pm. Due to the number of people who love Erica, we are prepared to accommodate everyone with valet services at the Wang's home. Additionally, we ask that in lieu of flowers, please make a donation in Erica's name to the Leukemia and Lymphoma Society.

Personally, my heart hurts. I am grateful for her release of pain, but so selfishly want her near me, to grow old with me, and fulfill all the dreams we had together. I acknowledge that I may never fully heal from this experience--and that's ok. I don't want to forget this raw ache because I believe it will be my guide to live a life she would be proud of... I will miss her smile, her kisses, and her unwavering support... oh, the list of things I will miss can go on forever... my soulmate...

The last three years has shown me what it is to feel truly thankful. I am thankful for time with Erica to tell her daily that I love her... I am forever grateful to the support team that has built up around me and my family. Words don't begin to scratch the surface of my gratitude and I know that I will try my hardest to repay these kindnesses.

I hope you all can find a sense of peace too....

Calm and natural...

2008-12-01T13:51:00.000-05:00

Due to the lack of ability to treat her widespread leukemia and the increasing number of side effects of the disease, the treatment of Erica’s disease has been stopped. At 9:35 this morning, she was taken off blood and platelet transfusions, anti-biotics and IV. She will be made comfortable with pain medication and whatever other means that the palliative care team here at Stanford suggest. At this moment, she is sleeping easily, very much at peace.

This is an extremely sad moment for us all. What Erica wanted most was to make this time “calm and natural”. Music will be played in the background, stories will be told, tears will be shed, laughs will be had.

At this point, for yourselves, do what is “calm and natural” as well. If that means hugging your closest loved one, going out and celebrating Erica’s life, commenting on the blog or whatever makes you comfortable, please do so. If that means flying to San Francisco, then that is what you should do. If you choose to do this, it is uncertain whether you will be able to see her or not, as family need to be with her, but being close to a group of Erica supporters may help the mourning process and commemorate the absolutely wonderful life she has lived.

We will keep updating the blog with any new information or changes that occur.

To lessen the burden on the family, please contact Jamie (805.501.1972) or myself (719.650.3258) with any questions.

With much love and sadness

stable

2008-11-30T16:16:00.000-05:00

I am sitting with Erica in her room with a little sun streaming in... she is peaceful and calm. Our family is here in the waiting area and there are a few at a time with her. We talk to her and tell stories and memories... Occasionally she stirs, but mostly she rests.
I think that perhaps the details aren't as important right now, so I choose to skip the medical play by play.
I do tell her about the posts of encouragement and love... it's important that she, and everyone else, know that there is so much love in this little room. I will post again when there is a change or anything new...

seizures

2008-11-30T09:56:00.000-05:00

last night, erica suffered two seizures. after each one, she was non responsive... slowly she began to respond to the doctors poking and jabbing... but she couldn't identify anyone. She sort of looks right past you, never at you. She seems soothed by Josh's voice--this comes in handy now as she seems so infantile in her movements of eye rubbing and scratching and attempts to remove tubes... she doesn't speak but has mumbled once or twice. although we talk to her and try to communicate, we are quite certain that she is not her right now.

the tears don't seem to stop flowing, even as i type this... we are at a loss. the largest loss since this all began because we dont have her strength to guide us now. i can't and will never describe what it was to see my sister endure a seizure... two seizures... i don't wish that on anyone.

i don't know what will happen today but the plan thus far is to keep her comfortable and calm until we know the results of the MRI and go from there. The head CT post-seizure #1 didn't show any bleeds and we are told that she looks similar to pre-seizure.

we will take today as it comes. please please pray....

Re-admission

2008-11-29T19:00:00.000-05:00

Family and friends,

Many of you have already heard the news: after a wonderful evening of dancing at Jill and Gary's holiday party yesterday, Erica had a very rough night. She spiked a fever of 102* F and then starting to throw up blood. Luckily, Josh was with her and rushed her to the hospital. We've been here all day, but she has been sleeping thanks to the OBSCENE amount of pain meds given this morning.

This morning, Erica was complaining of an extremely painful headache. They gave her a LOT of pain medication to help alleviate it. Now, nearly six hours later, she is still sedated by the medication and rather non-responsive. When she does seem to stir a bit, she mumbles incoherently and goes back to sleep. They gave her naloxone to try to counter the effects of the opioids in an effort to interact with her. It only caused her to become very scared and agitated. This lasted for a few minutes, but she's calm again now.

As of right now, her temperature is holding strong at 103.8* F. She has a nasal tube for oxygen and a steady flow of antibiotics and fluids.

Everyone should just hold tight for now--don't book a flight or rush over to the hospital. She is in a sleep induced state now that prohibits her acknowledgment of anyone in the room with her. I am here with my mom and Josh, so she is never alone.

As things are in a state of limbo now, I will *try* to post regularly. We don't know what the results of the CT and chest x-ray are yet and we are still waiting to take her down for an MRI.

Until then... peace.
Jaci

102.4

2008-11-23T15:54:00.003-05:00

Is it the fluorescent luminescence that draws me back time and time again? The bone-grinding procedures, the hilarity of my bodily functioning being table talk, or maybe those dang-good-spirited nurses smocks perhaps? No, it is is none of these things that find me here again, in yet another room at Stanford Medical Center.

I'm here because I woke up with a high fever on Thursday, 11/18, and fevers are a good sign that there's some kind of infection in the body. Because my white blood cell count is so low, other indicators may not present themselves (such as pus, swelling, etc), we and the docs are left wondering at the source.

Meanwhile, the results from Wednesday's bone marrow results were not happy. One's bone marrow should be filled with white blood cells (as one is as a newborn); I apparently only have about 10% total up in there (what a 90-yr-old might have) and of those, 80% are leukemic.

It's Sunday now and I've been without fever for 24 hours. Another 24 and they will assume that one of their IV antibiotics did the trick and I can go home.

Whether here or there, the same questions loom about the big picture. The "how do we keep this girl alive as long as possible game?". I can see the doctors all white-coats-aside throwing darts at a board with the following in various rings:

should she do another round of vidaza/myletarg?
should she can another infusion of cells from her original donor?
should we just send her home and let hospice take it from there?
should we try XXX brand of chemo next?

So if anyone asks you, How's Erica? you can say that neither she nor her doctors have any idea.

For me, my emotions are all over the place. So much sadness. sadness. sadness. a bit of anger and fear.

Friends and visitors and all that the tokens they send remind me why life's worth fighting for.

Seeking eastern medicine for poor chi. Will travel.

2008-11-18T15:26:00.001-05:00

Erica asked me this past weekend, “Is it weird talking to a person who may be dead in year?” As I was completely taken off guard by this, I fumbled through a chastising list of reasons she shouldn’t talk like this, shrinking in my seat. But a day later, I brought it back up and honestly answered that “yes, it’s weird and it sucks… but it’s sort of a gift too”. I love that she understood what I meant.

We are enjoying each day for what it is and have sort of jumped the gun too by putting up a Christmas tree a wee bit early this year. Every other day, Erica still must go back to ITA to have her blood drawn and has consistently needed platelets. Some days she has more energy than others, but has taken to napping each day and sleeping 10+ hours a night. She has a pretty decent appetite, and with all the amazing dishes being sent over, it’s hard to object! Her spirits are always the highest when she’s with family and friends. So it’s good to see that some things never change!

One new development is the inclusion of eastern medicine to Erica’s continued western treatment. She still receives her low-dose chemotherapy monthly and takes all the meds prescribed by her physician at Stanford Medical Center. In addition, we went to meet a woman who is a Chinese herbalist and has been treating patients with a variety of ailments with treatments/herbs utilized for thousands of years. She spoke to Erica through our Mom (aka “translator”), asked about the meds she’s currently taking, felt her pulse, and examined her tongue. After a minute or so of “aaaahhhhhhhh”-ing, she came to the conclusion that a specific blend of dried herbs boiled for a couple of hours will fix Erica’s chi. In short, Erica’s immunity needs help, and her chi sucks. We quickly found that the final product of this boiling is something like a stinky brown sludge. Our Mom now boils this in an electric pot/kettle out on the balcony so we don’t have to smell it in the house, but poor Erica still has to drink two bowls a day! After cheerleading it down her throat, I stepped up to show her that it’s just not that bad… I found out that it’s far worse than Erica ever let on! One sip had me coughing and gagging, and she drinks bowls of sludge! So after this experience, I admit that most of my skepticism regarding eastern medicine was put to rest knowing that Erica believes in its healing properties enough to endure its flavor. I am not extremely educated in eastern philosophies and medical ideologies, but I certainly respect it.

In case we don’t post again before Thanksgiving, from our family to yours, gobble gobble all the goodness this year! It’s hard to imagine a family more thankful than ours: to know Erica, to love her, and to have the privilege of each day with her as a gift.

Home

2008-11-11T19:41:00.000-05:00

Hi Everyone,
Sorry for the long delay in posting. Erica was released from the hospital on Sunday afternoon and went home to her Mom's place. Last week Erica received a low-dose chemotherapy and another treatment in an attempt to keep her counts in check, meaning keeping the leukemia from rapidly reproducing. These two treatments called Vidaza and Mylotarg were chosen by Erica and her family because they had the best chance of prolonging her life without making her horribly sick, and so far, it seems to be working. Right now her main complaint is oppressive fatigue which could be a result of few different things. The plan is to be checked at Stanford 3 times a week and monitor her counts.

She asked that I send her thanks for all of the displays of love and support. The cards, the gifts, the blog postings, the e-mails, and all the wonderful meals made her time in the hospital a little more bearable.

Jamie

P.S. Good news, Erica is the proud owner of a new iPhone (same phone number)! For those of you who she is in touch with, please text her your phone numbers (don't forget to include your name).

it's an icky, rainy day outside.

2008-10-30T16:43:00.001-04:00

It is with heavy hearts that we write the blog this afternoon. Yesterday Erica received the devastating news from her doctors that the chemotherapy did not work. There are 40% blasts in her peripheral blood which indicates that the leukemia is still in her body. Therefore, there is no need to do the bone marrow biopsy as planned.

And it gets worse. The docs have offered her two choices: (1) another round of chemotherapy if she would like to try but aren’t very hopeful that it will work. As always, the numbers aren’t in her favor: less than 10% chance it will work and greater than 90% chance it will mean that she dies in the hospital due to complications and/or infections.

(2) Her other option is to leave Stanford and go home. Home to wait, to figure things out, to try and deal with what lies ahead. One doctor said that she may have 3-4 weeks… another speculates it could be months… we understand that it is really the progression of the disease and we are at its mercy.

Needless to say, she is numb and sad. Please keep her in your thoughts and prayers and respect her desire for privacy at this horribly difficult time.

All our love,

Judy, Jaci, & Jamie

Note from the editor:

2008-10-28T16:58:00.001-04:00

Dear Readers,
For those of you who thought to yourselves after reading Erica's blog from last night "Hmmmm, I wonder if Erica was on mass amounts of morphine when she wrote that blog?" The answer is YES! Her comment to me was "I am going to write a quick blog saying that I lost my iPhone," and the blog below is what she came up with. I would just like to point out that this blog was written after a long, hard day filled with serious pain and numerous tests. Will fill you in about that later. For now she is in very good spirits and taking it easy.

Your loyal blog editor,

Jamie

Breaking News

2008-10-28T01:13:00.004-04:00

iPhone Appears to Escape Vampires' Den
BY Erik Hurray

Palo Alto, CA. According to initial reports just leaked from unnamed sources within Stanford University Medical Center, an iPhone known as EJ's Mobile has gone missing. It was last seen Thursday, October 23 by private citizen Jamie Murphy, in the hands of a young medium-built female trying to pass off as a civilian. She wore street clothes but her Medusa-like tangles of intravenous tubage clearly signaled in-patient status. Her mendacity at not wearing the traditional patient gown immediately made your correspondent raise his eyebrows.

The mysterious woman, too bald to own the alias Medusa has been dubbed "Twilight" after the runaway vampire book series and because of the red streak of crimson at her mouth (which she claims is from Jill's spaghetti that night, but your correspondent remains unconvinced). Murphy says that she noticed Twilight had to be moved FIVE times around the F, E, and D units and nurses confirm that finding staff that were willing to draw blood 3-4 times per day from Twilight, whose translucent skin seemed to glow in a spooky way that allowed easy access to good viens but whose icy temperatures forced phlebotemists to wear multiple pairs of latex gloves when examining the alleged patient. Before we could conduct further questioning, Twilight seems to have vanished, leaving neither a drop in her hemoglobin transfusion bag nor any clue as to where she's headed. (Her insurance, HMJPG Hockey Mom & Joe the Plumber Group, is apparently a total fraud and covers no one, so finding the likely culprit through a paper trail has dead ended.)

The search for the missing iPhone has been conducted in a professional and thorough manner. Amber alerts have been issued on the 101 and 280 freeways. Digital Voicemail-sniffing dogs scoured the patient units, the 3rd floor VIP room, the cafeteria, and the radiology ward, places EJ's Mobile's owner has frequented lately. As each hour passes, the owner has less hope that the mobile device will be found intact. "I have had it for about a year and half," the owner, who wishes to remain anonymous, said. "I'm not sure how I will be able to fill the hole its absence has left in my purse."

iTunes stores have offered songs for $0.89 for anyone with any information about the whereabouts of Twilight or EJ's Mobile. Please study the artist's rendition of the missing machine pictured here. Now immediately going to voice mail, experts agree that its battery has long ago burnt out. Still, EJ's Mobile's owner remains hopeful and the search goes on for Santa Clara County's #1 vampire fugitive.

If you have any information, any information at all, please call Room FG30 at (650) 498-3067 instead of EJ's Mobile.

Another Day, Another Room

2008-10-26T14:18:00.000-04:00

Greetings from Room F30- Erica's latest (and hopefully LAST) hospital room here at Stanford Medical Center. Things are settling down a little bit as we are getting situated in the new digs, Erica's feng shui-influenced supervision guiding us in our attempt at peace, order and tranquility. Obviously, Erica's immune system is still almost non-existent, and she tires more quickly than usual as a result of this and her medication, but I have to see say- homegirl is looking good! Josh was able to change his schedule and flew in yesterday from Sydney so I am sure this surprise visit lightened her mood substantially, and we spent the day catching up, eating Halloween candy and playing Taboo with Linda and Judy. We are hoping today will be a non-eventful one: no procedures are scheduled and no new infections or aches have developed (knock on wood!) As Jamie said, we are pretty much playing the waiting game at this point. Unfortunately, yesterday the doctors decided it was a good idea to put Erica back on her low-microbial diet, which means right now she's eyeballing the congealed barley "soup" they just brought in for her lunch with justified skepticism. (On a side note, I've been told she's totally OK with me soliciting home-made cookies or treats on this blog. Basically anything made from scratch is doctor-approved and welcome!) Unfortunately, she's still under pretty tight lockdown as far as visitors are concerned due to her weakened immunity, but all the cards, packages, prayers and positive thoughts are so appreciated. Please keep them coming!!! Again, Erica's new address is as follows:

Stanford Hospital & Clinics
Attn: Erica Murray- F Ground 30
300 Pasteur Drive
Stanford, CA 94305

"A tough spot."

2008-10-23T12:23:00.006-04:00

"A tough spot." This is how one of Erica's doctors explained her situation, and she is indeed in a tough spot. There are so many variables, so many uncertainties, so much waiting. Waiting for her white blood cell count to drop. Waiting for her white blood cell count to come back up, then waiting for the results of the bone marrow biopsy to see if this course of chemo worked and put her into remission. Nothing has been decided beyond that. There has been talk of what to do if and when she achieves remission but no firm plans made.

Erica finished a 5-day course of chemotherapy on Sunday night. We won't know for another 15-20 days whether or not this chemo worked. In the meantime we do as we have done before, try to keep her infection free, and so far, it isn't going so well. Since she is neutropenic (meaning she has no immune system) she has developed a fever and infection and the doctors are currently trying to get a handle on it and figure out how to treat it. In addition to this new infection, she is starting to feel the other effects of the chemo: weakness, nausea, soreness, and just all around crappy.

A note to visitors: please, please, please do not come by unless you are 100% healthy and have not been around anyone who has been ill recently. Also, please make sure to schedule a visit, don't just show up. We need to make sure we don't have too many visitors in the room at once. As Erica is currently fighting this still unknown infection, it is probably best to hold off on visiting for now until we know what is going on.

One other small update, Erica's room number has changed. She is now in room D41. The full address is below.

Jamie

Stanford Hospital and Clinics
Attn: Erica Murray, D Ground 41
300 Pasteur Drive
Stanford, CA 94305

Oct. 17, 2008

2008-10-17T19:31:00.001-04:00

"SURPRISE!"

Yes, the look of complete shock on Erica's face was well worth the hassle of booking an impromptu flight for the following morning. Andres and I showed up at Stanford Hospital yesterday while Erica, Mom, and Jamie were enjoying lunch outside. Erica's whole face froze, Mom started crying, and Jamie screamed--twice. It was so perfect!!

We spent the afternoon catching up, but even yesterday, Erica began to show signs of treatment effects. She was tired and needed to nap for two hours to make it through the day. By 9:30pm, the nurse came in to administer the third bout of chemotherapy. This involves giving one chemo, waiting three hours, and then giving another. Overall, it starts at 9:30pm and ends around 4am. Can anyone guess why she's tired???

Today, Erica needed a CT for a persistant cough and a bag of platelets, too. Otherwise, the only treatment she received thus far has been at night. As the days progress, she will need other infusions and medications to manage the side effects from the chemotherapy.

Personally, it's lovely to see her... she is positive, laughing, and surrounded by lots of support and love. She is still able to check email occassionally and we read blog posts to her, so she knows all the kind comments that are left here.

I think it's important to mention that Erica has told us that she values time alone. In past hospital admissions, she wanted people to be around her all the time--and I'm talking about as many as can fit in the room! But this time around, she seems content and pleased for moments of introspection and restful quietude... Don't get me wrong: she still loves visitors! But please be aware for those living locally, to perhaps keep visits shorter than has been in the past. And for out of town visitors, please don't expect to sit in the room all day and night as we used to. That said, feel free to still coordinate visits, but know that you need to take long breaks away...

All in all, she's still fighting, brave, and humble. She doesn't ask for anything and she's more concerned with our well-being and state of mind. She has spent some restful time painting, reading, and journaling. She even still lets me climb into bed and spoon with her...

Update

2008-10-14T21:21:00.000-04:00

Hi Everyone,
Sorry I didn't post last night. There was nothing new to report. Erica spent most of the day yesterday just waiting around for answers and nothing ever came. Today has brought a few more answers but there are still some uncertainties. Erica's team of docs came in around 9:00 this morning and told us that her preliminary lab results are showing that she relapsed with leukemia, but not precisely which type. The short-term plan is to treat her with chemo in an attempt to get her into remission. If remission is achieved, her docs will have to figure out what her best option is afterwards. It is not as simple as doing another transplant, which at this point does not seem to be an option. There is talk about clinical trials or mini-transplants but nothing has been decided on for now.

Erica will most likely begin chemo tomorrow. She will be given a course of chemo that will last anywhere between 4 to 7 days. After that, the waiting game begins for her counts to drop and then to recover. Unlike the last 2 times that Erica has gone through this process, she now has the added obstacle of fighting graft versus host disease caused by the bone marrow transplant. Erica will most likely get very sick over the next couple weeks and will need your love and support more than ever. This next month will be incredibly challenging for her so I beg of you to send all of your love, energy, and courage her way. Below is her mailing address here at Stanford, she would love to hear from you.

Love, Jamie

Stanford Hospital and Clinics
E1 BMT
Attn: Erica Murray, E124
300 Pasteur Drive
Stanford, CA 94305

What we know

2008-10-12T23:49:00.000-04:00

Well turns out we don't know much more than what Jaci posted on Friday. Erica went to the hospital on Saturday expecting to be admitted but it turns out they just drew some blood and sent her home. They told her to come back Monday morning for admittance. They still haven't been able to tell her what type of Leukemia it is (ALL or AML) or what the treatment plan is. Hopefully we will know more come tomorrow and I will post again.

Jamie

strike 3

2008-10-10T20:11:00.001-04:00

It's Jaci... short until we know more information and what's going to happen: Erica relapsed again.
Just pray, meditate, send love, do whatever you do.
I promise to write a longer more explanatory post tomorrow...

Participants Wanted

2008-10-08T15:32:00.001-04:00

As a component of the documentary we are working on, we seek to explore some of the common threads young adults with cancer experience. We are currently seeking cancer patients and survivors, aged 18-35, who wouldn't mind being quickly interviewed on camera for the film. If you or someone you know falls in that age range- or they had cancer, particularly a blood cancer, during that age range- please let me know if they'd be willing to share a bit of the experience with us. We are planning to film folks we know in the Bay Area, Los Angeles, New York, and Boston, but can work with you if you live elsewhere!

And the announcement of our working titles:

... drum roll please...

After receiving survey responses from 63 people (thank you, by the way!) and after careful consideration by the production crew, we decided to adopt two working titles, one for the 10-minute "short" (used for applying for grants and for submission to certain festivals/contests) and one for the full-length documentary.

The title of the short will be: You've Got Cancer

The title of the documentary will be: Bone Dry: A Journey Fighting Leukemia
Keep in mind these are working titles and could change/evolve. But for now, project Bone Dry forges onward!

Thank you to everyone who has donated their time, money, and creativity to this project so far. If you want to learn more about it, you can visit http://globalnarratives.org/documentary.html. By the way, we are in the process of acquiring fiscal sponsorship which will render your future donations tax deductible!

Mouth Punch Biopsy

2008-09-30T18:33:00.001-04:00

I still have strange bumps on the roof of my mouth that usually appear while I eat. They are often painful and irritable. They vary in size and hardness but are filled with what seems like salt water. (?)

They're tough to show you, but take my word for it.

So, I was sent to the Ear, Nose & Throat doctor. He, like everyone else, was mystified. If you look carefully at this shot, you can actually see the little opaque bumps up there.

First, he wanted to make sure it wasn't some nasty virus seeping up through my palate into my sinuses or, worse, to my brain. To do this, he had to numb my nose with spray anesthetic and then insert this long-ass tube camera up there. NOT fun.

Yay! No brain virus. But what are they? Me, eager for the upcoming "upper hard palate punch biopsy".

He hole punched out a block of the roof of my mouth about 1 cm cubed.

Then they very dexterously stitched me up with unnecessarily long floss-like thread.

There's the hole.
It healed very quickly and with minimal pain. Unfortunately, the results came back revealing... nothing. It ruled out some specific things (such as GVHD), but did not identify any other causal specifics.
So, he had me come back and do it all again- that time with two bigger punches. Again, the results revealed nothing. He suggested taking yet a bigger piece of my hard palate, this time under full sedation and possibly using a graft of skin from behind my ear if we inadvertently expose the bone (!), but...

My BMT doc seems content to call it GVHD and I suppose I agree. There are countless ways a body can give the finger to its invading graft cells and one of mine is my mouth bumps. My doctor and I hope that it'll just go away when it's ready, but I hope in the meantime to stop the futile steroids that simply are not the right anecdote.

I'm pretty sure all of this is just balancing out for the fact that I've never had any dental work done ever- not even a cavity filled. I now understand the terror trips to see the dentist can elicit in people!

Medical Update / Science Fiction

2008-09-26T17:59:00.000-04:00

Sorry for alluding to recent doctor's appointments and not following up with the deets until now.

At my last clinic visit with Dr. Miklos, I learned that I will not be able to fly until well after the time the "book" mentions as safe (six months post transplant- November) because I have had to be on all of these immuno-suppressants. These drugs take a long time to taper to avoid other complications. So, should I begin successfully lowering my steroid doses imminently, as we have planned since they're not seeming to do squat for my GVHD symptoms, I won't be in a safe zone until perhaps mid-Spring 2009. My doc (pictured here) is convinced that being in a chamber of recycled air with 350 strangers for several hours is a prescription for infection and while I am 110% behind him on being conservative, my wanderlusting personality plus the fact that my friends and family live all over make me crave distances only accomplished by air. It's OK though, these people and places will still be there in May, June, the rest of my life.

Secondly, I was saddened to confirm with him that I will not be able to go on hormone replacement therapy until at least a year post-transplant. Estrogen messes with your liver and during this time liver concerns are paramount. We don't want anything altering their ability to test how my liver is reacting to its new system. Why am I sad? Well, due to the radiation and chemotherapy, my body has basically undergone premature menopause. My body is supposed to produce hormones for around another twenty years, so basically I'm going to crumble into a crypt person by age 31 if I don't do something about it! Ok, so maybe not a crypt person, but here are some things that HRT could help:

I'm already osteopereunic. HRT helps prevent osteoperosis (bone loss).
heart disease
high blood pressure
vagigi dryness
eye dryness -- i'll come to my eyes in a second
short-term memory loss
hair thinning
increased facial hair- always sexy
slowing metabolism
high cholesterol (having this checked in a couple weeks; not sure if its an issue yet)

All of these fun things you shouldn't really have to worry about until you're also worrying about your retirement payouts and grandchildren's jumper sizes. I know HRT is not a magic arrow, but for young people undergoing premature menopause it's a no brainer. I wish I could start yesterday.

What else? Since the mouth sores haven't improved, we are experimenting by incorporating ANOTHER drug into my regimen. (I would say that the mouth bumps have not changed much quantitatively, but perhaps qualitatively, as I've grown used to living with them.) I love my doctor for many reasons, but one of them is that I know his brain runs on high-octane super fuel and he's always evaluating my condition based on a million different scenarios/drugs/causes that he personally knows and probably has researched personally and probably won some award for.

Anyway, he often forgets that we are mere humans and torrents of technical medical jargon come spewing from him as he orally postulates what next to do with this strange girl with disobedient mouth sores. It was interesting to hear all of my options for drugs, their various pros and cons and also to realize that their operational platform relies on defining the type of GVHD I have and they can no more easily do that than presecribe a cure. Because mouth sores often afflict people more than 100 days post-transplant, there's a tendancy to call what I have new-onset chronic GVHD. But, since I presented with this well before 100-days, they are examining if I am now in fact dependant on the steroids; in other words, the bumps and the steroid level are at some kind of equilibrium whereby decreasing the drugs will increase the problem. This is called steroid-refractory CGVHD. Anyhoo, he settled on a mycophenolic acid immuno-suppressant. My pill box is bursting and I may have to upgrade, but at least this might signal the beginning of prednisone (steroid) tapering.

Lastly, I also went to see the opthamologist. I have had blurry vision and trouble reading both up close and at a distance since I was in the hospital. Some told me that it was another gift from my good friend, steroids, and would go away when he went away. However, Dr. Ta had a different tale to tell. After I began to think he was just using my eyes as a palet for mixing various colored drops for painting, and then messing with me using lazer pointed lights and torture-chamber-looking facial attachments, he announced in a cheerful voice:

You've got retinal hemoraghing. Yeah, so I'll refer you to a retinal specialist.

You've got cataracts in both eyes. No, they can't get better. Yes, they'll get worse as long as you're on steroids. Implant surgery is basically an inevitability. No, you're fully awake during it, but it's an outpatient surgery and very common. Nothing to worry about!

Oh, and your eyes are really dry. So, we can't rule out that you don't have graft-versus-host-disease in your eyes.

Have a great day!

SUMMARY: Big issues- fine. Little issues- dealing. And I finally get to get glasses like I've wanted for decades. If it acts like a nerd, smells like a nerd, and talks like a nerd, it should look like one too. Right?

Cathy

2008-09-19T23:21:00.002-04:00

If you've visited me in B-game, you've probably met Cathy. She lived across the hall from us and was a dear friend of my Mom's before I moved in and a dear friend of us both thereafter. She, another woman down the hall, Harmony, Cathy's best friend June, and my Mom would get together nearly every night, in their PJ's and drink tea and chat. Amazingly, they all had so much in common- including 3 being nurses (all but my Mom), all having worked for Pan Am Airlines (all but Harmony) and all being Canadian (all but June). I called them the Golden Girls and took much solace knowing that my Mom lived in such a friendly environment where she could not only rely on her neighbors for the bare essentials, but almost lived in a dormitory-style environment, where loneliness was never much of an option.

When I moved here, I knew that Cathy had been battling breast cancer, but she was beating it. This photo was taken a few months ago- her hair at somewhat the same stage mine is at right now. Unfortunately, the cancer spread from her breast to her lungs and further to her lymph nodes. In recent months, she developed tumors on her head, outside her skull. Still, everything seemed treatable. There was radiation and chemotherapy planned. She was hopeful. I had just set up her new laptop and she was SO excited to start using it. She was planning on going on a New England fall foliage adventure this month.

I went away for a few days last week and when I came back, Cathy had done a 180. She was completely doped up on morphine, a hospice nurse was coming daily, and her friends and family were preparing for the end. I was shocked. Then, I was hopeful again. I mean, so she's on a lot of drugs to help with the pain? I was on so many drugs that I have about a 2-week memory blank from May, but I came back. Cathy will be no different.

I was naive. Cathy died this afternoon. My Mom and I came back from my own sobering doctor's appointment to see two men in suits walking down the hall from her apartment. My Mom stopped dead in her tracks and I, even having watching every season of Six Feet Under, didn't understand who those men were until Harmony came out of the door and told us that Cathy had passed away at 3:00 that afternoon and those men, of course, were there to take her body away.

I'd never seen a dead body before, but it wasn't scary or disturbing. I was glad to get to see her one more time before they took her, to stroke her blanched hands and kiss her temple. The loss of Cathy in our lives is going to be huge. She was an extremely special person, as kind as anyone I've ever known, so grateful for the tiniest of pleasures, for the tiniest of blessings. Her last name is Reveler and boy, did she revel. She loved being around my friends and somehow remembered everyone's name and details. I know that those of you who've met her can testify to this. I am a little bit in shock still, I think, but take comfort in the beauty of who she was, in my luck in getting to know her, and that she is no longer in pain.

This has been a cancer-saturated day.

First, I had to go to the nail salon because there is a woman there who is (in my experience) an expert in dealing with chemotherapy-afflicted toenails. She is this way because her 2-year-old has brain cancer. She insists I come in and she cleans up my dying nails, preventing and healing in-growns, and releasing the hardened dead nails from the new healthy ones- all without pain to me. And she will not take any money from me for this. We always talk about Katie, her baby daughter. She's currently at UCSF getting radiation.

Then, I played tennis with my friend Bess and found out that this little angel, Sophia, who I had met at Easter this year, had died from leukemia this week. She was diagnosed when she was two and died this week at age 7. She was one of the most beautiful children I'd ever met: bright green eyes, curly dark hair, and a shy sweet smile that called for love at first sight. I'm not sure if she was ever eligible for a bone marrow transplant, but, being a mix of african-american and white, her mother had told me that they'd had difficulty finding a match. Bess said her funeral was made into a celebration, with tons of children in attendance and everyone encouraged to wear bright colors and be grateful for sweet Sophia's LIFE.

Then, I went to my own clinic appointment, which I will write more about later. It seems like these souls deserve, at minimum, all the attention of a post. Cancer. Sometimes it feels like more than we can fight.

OMG

2008-09-09T11:36:00.001-04:00

[Addendum: 9/17/08.
This is not supposed to be a political blog, so I didn't want to extend the Palin vitriol any further here. However, this piece was so resonant and thought-provoking to me that I had to share it.]

Original post: 9/9/08

When I and the nation learned of McCain's choice of running mate, I was a bit charmed by her shake-up-the-good-old-boy-establishment mission, her oratory skill, and well, the fact that she's a she.

In a matter of days though, I have grown to hate Sarah Palin. She's redundant, mendacious, and myopic. Not to mention she stands for 27 policies I disagree with. Her voice now sounds to me like screeching fingernails on a chalkboard and all I can think is: this shouting woman just got a passport last year!

If I could shout back at her, I'd say: Get off that pulpit and go home to cuddle your new baby with down syndrome and to teach your kids about birth control. Then take a few years to explore the thawed world: Brazilian favelas, Tokyo hostess clubs, Mongolian sunrises, Moroccan couscous. Then reassess what the hell you and your speech writers were thinking to mock the work of community organizers; take a moment to realize that a PTA volunteer and hockey mom is exactly that. That a politician is exactly that. Lastly I would tell her that her true calling, as anyone can see, is as a LensCrafters spokesperson and she ought to politely recuse herself from the VP race and hurry in for an audition.

This woman can take her hypocrisy and shove it where the sun don't shine.
(I'm meaning back to Alaska, you dirty mind.) Thanks, but no thanks.

Labor Day Q: What do I DO all day?

2008-08-28T17:28:00.002-04:00

There are two questions I get quite frequently. The first reflects people's perceptions that I'm done now with this Cancerpalooza (um, no.): So, what are you going to do now? Like I just won the lottery or the Heisman. Well, I'm not going to Disneyland.

Other than knowing that for fact, I'm not exactly sure what I'm "going to do". I was entertaining the idea of heading back to Fletcher to finish off my masters in January, but I actually think that's too soon. Four months from now feels just a little soon to pack up and move to a wintry Boston. (Actually right now, as I sit in front of my neighbor's A/C unit like I'm auditioning for a Sierra Mist commercial, the snow sounds pretty awesome.) Other than postponing school, I'm not really sure what I'm going to do "now" or as my physical, mental, and psychological state comes back to a variant state of normal. Mostly, I think I'm trying to let things just flow, trying to subdue my innate anxiety about not planning and full-on pursuing "the next step", and just rest. As my doctor said today, I need to realize it's a long healing process.

[Note on today's Clinic Visit: Doc says the mouth looks a lot better, but symptoms continue in their unpredictable and inconsistent way, so up the steroids go. Some liver enzyme level is high enough to reinforce the decision to up my steroids again, since GVHD is frequently manifest in the liver. He said if my eyes get yellow, that's jaundice. Sounds gorgeous. Other than that, counts look good.]

Ok, so Question #2, which I feel only slightly better able to answer is: What do you DO all day long? I used to giggle and shrug, finding my daily schedule embarrassingly unproductive, mundane, and difficult to quantify or explain. But then, I really started to think about it and I realize that I'm up to some cool-ass shit! Check it out.

I'm co-producing a documentary. I'm writing a paper about Chinese media censorship. I keep in touch as best I can; you know how much time e-mail absorbs! I am, albeit slowly, starting to apply for gainful employment. I work to provide my counsel with whatever discovery information they request. I'm working on finding an agent with whom to possibly publish a book. I'm exercising every day, including yoga, aikido (well, I will start classes in a couple weeks- eek!), tai chi and walking. [My Bay Area posse: we keep talking about tennis! Let's go make silly fools of ourselves on the court sooooooon.] I cook a lot. I do big organization projects in our apartment. And, I manage my often-confusing schedule of health-related appointments and medications. Then, I also make myself relax and read or relax and watch Heroes or relax and watch CNN or relax and meditate.

This all takes time, people! Plus, is my 2000-piece puzzle going to put itself together?? hmm??

I have these To-Do-Lists that never seem to get done, but yet couldn't really explain what I do all day. It is very hodge-podge and I'm constantly distracted from one thing to another, but I rarely feel bored.

So, when next you wonder what this unemployed sick girl does with her days, now you know. And with this writing exercise, I finally do too.

Free at last... Not so fast

2008-08-19T12:26:00.000-04:00

Poised at the blocks, ready to commence my Olympic track race toward my old healthy self, I can see me at the finish line, with hair grown, battle scars proudly worn, somehow wiser. But then, just as the gun blasts to mark that it's indeed been 100 days since transplant, I try to lurch forward with all my soul and strength, but find myself as in a dream, fighting to run through invisible molasses. Unseen forces hinder my progress forward, keeping me close to the starting line. All of my fellow runners have left in a blur of color and I thought I'd be with them, now, finally, but this tortoise has a few more lessons in patience to learn.

"Just use your common sense". Those were the words my fabulous doctor told me in clinic last Friday. He meant this in regard to crowds, being around (even slightly possibly sick) people, air travel, parks-- all the no-no's. I love him for this advice. I've hated the seemingly arbitrary nature of the 100-day mark and the 6-month mark and the 1-year mark. I know it's an average of scientific research (though bone marrow transplants are still a very evolving and relatively "new" procedure) rounded way up to to a round number. I took some liberties with Day 100, enjoying the fresh air and eating out by Day 90 or so. I prefer to use common sense when I must balance life with treatment. It's empowering, logical, and the right prescription for my brand of endurance.

As this journey goes on, I'm content to be conservative about what I do. I've come to a kind of peace with the molasses; in fact, it tastes amazing to just let yourself take the time to heal at a gentle pace. I don't want to be the runner who has a vast lead all throughout the marathon and then gets a leg cramp at mile 25 and cannot even finish. Things are going as well as one could hope with a mismatch allogeneic transplant and I intent to keep it that way.

For instance, I canceled two semi-planned trips for November. Keeping me out of planes is tough with family on the east coast and lusting to visit foreign lands again soon. I was somehow asked to be on this panel for a symposium on women entrepreneurs in New York, but, even though I'd be technically 6 months and 5 days post transplant (and according to the books, you can fly after 6 months), I declined--- JUST IN CASE. The risks are just too high. Too many stories of patients who endure infections, frequent hospitalizations, and death, because they were coughed on by the wrong person. In that vein, I'm trying to be more vigilant about reminding people that if they're ill, please let me know (read: stay away).

I'm stronger than 100 days ago. I've watched my body heal and grow; it seems to take 3 steps forward and 1 step back, but it's moving toward that finish line. I'm down to only 22 pills to take each day. I have honed a super relationship with my roommate/Mom. I have started counseling for all the mental crap that my daily pills don't address (and perhaps exacerbate). Because we couldn't do much but hang out at my place, I've been endowed with countless hours of quality time with friends who visit. And I've discovered that there is a lot of non-raw sushi rolls out there-- bring on the shrimp tempura and spider rolls.

Hold the sashimi. For now.

Cautiously Optimistic

2008-08-04T07:03:00.001-04:00

At Friday's long-awaited clinic visit with my main transplant doctor, we got the results from Monday's bone marrow biopsy:

"No evidence of disease".

In other words, no leukemia. No cancer. Gone.

This is worth a cheer. It's been interesting to me to watch people's reactions to this news. Across the board, people are jubilant, utterly giddy. I hear their (silent) sighs of relief that this is over, finally. It's fun being the bearer of good news.

A friend of mine has as her "Religious Views" on Facebook.com that she is "cautiously optimistic". I think that phrase would best characterize how I feel about the biopsy results. There are nine months until I'm one-year post-transplant, when I can actually contact my donor to thank her for saving my life. The reason for this one year delay is because risks are rife still and will continue to be for my entire life. In other words, it's not so cool if you find out the chick you donated marrow to kicked the bucket six months after she flew out to Warsaw to give you an appreciation hug. And the graft-versus-host-disease I have still mystifies my medical team as I suffer through their various drug attempts at remedy.

Of course, that whole "kick the bucket" thing is not going to happen for another, oh I'd say sixty years, but I have definitely become more than a little jaded about the concept of being "cancer free". The biggest fear is relapse. Who do you think has a better chance of developing leukemia (or a host of other fun cancers due to the treatments), me or any schmuck you pull off the street? Relapsing was more jarring to my sense of the world than original diagnosis. Coming home from yoga, planning my March 08 celebration of end of treatment, to find my sister on my bed in Boston with tears and news that my last biopsy... that memory resonates all too clearly and frequently. I have learned you cannot assume anything.
And, plus, who among us is "cancer free"? Who hasn't worried about standing too close to the microwave or wondered if it's true that anti-perspirant causes breast cancer? Who doesn't know someone who's died of the disease? We all face it every day, in our own ways.

So, yes, the biopsy results confirmed what other indications had suggested- no trace of leukemia. I remain cautiously optimistic. It's the best that I can do.

Day +88

2008-07-26T10:00:00.000-04:00

Day +88

Steroids are deadly. They can make you soar to unbelievable heights or dive into a dismal abyss. Because of Erica’s mouth sores that surface and play havoc with her whenever she attempts to eat plus other evidence such as a body rash, her doctors think its chronic GVHD. Hoping to eliminate or at least control the mouth sores to a certain degree, she was put onto prednisone steroids.

At the beginning, she was on a low doze, then they upped it to 100mg per day. For the past week, she has been feeling pretty lousy, being constantly fatigued, either sleeping constantly or not sleeping through the night at all. Not to mention that it’s playing havoc with her emotions to the extreme. She is irritable, forgetful and generally sad. However being the driving person that she is, she still tries to maintain somewhat of a schedule to keep her sanity.

Thank goodness Jonathan was here for a couple of days to balance things a bit. Gioia arrived from Switzerland via London last night and the girls, with Katie are off on a one day jaunt today to Carmel. Erica is so looking forward to getting away, albeit for only one night. She is sure antsy but you can’t really blame this foot-loose gal as she has been cooped up for the last 6 months.

However, the light is shining bright at the end of the tunnel. The 100-day mark is looming up ahead on 8/8/08, very auspicious in the Chinese calendar. 8 is always a very lucky number (as is today being Day +88 post transplant) and, for Erica, that date begins another chapter in her ongoing saga of her illness. All things considered, she is recuperating extremely well and despite all the discomforts her mouth sores bring, overall she has weathered the transplant very well.

Monday she will undergo her first bone marrow biopsy since the transplant and we will know for sure where exactly she stands. This is such a terribly painful procedure for any patient to have to endure without conscious sedation. Then on Friday, she will have her first clinic visit with her BMT doctor to find out the result of the biopsy as well as to access her future treatment.

Meantime, we have to congratulate her for being so patient, so enduring and so strong despite it all. We truly have to admire her spirit and courage. The past 2 ½ years have surely not been easy for her. She has come a long way since her first diagnosis.

Love you tons, sweetheart.

Mama-san

A Hilly Marathon Challenge!

2008-07-25T15:58:00.003-04:00

Dear Family and Friends,

On August 3rd, I will face the biggest physical challenge of my life: running the San Francisco Marathon! The training has been both grueling & exhilarating, with each Saturday long run a new achievement in distance for me. Before I started training 3 months ago, I had never run over 8 miles before, and the distance of 26.2 miles is more than 3x that amount. During my recent 21-mile run, I truly needed to muster up every bit of strength to just keep moving.

Through this marathon, I am running to raise funds for a documentary that I am Directing and Co-Producing with and about a young woman named Erica Murray. Erica has been facing even larger hurdles in her life with determination, strength and a great sense of humor. Yes, Erica has already run a marathon. But what she's facing is an arduous path much longer than 4 or 5 hours. Erica is living with leukemia, and for the past 2.5 years has persisted through indescribable lengthy and painful treatments of chemo and radiation. She's 29, similar to me, and this roadblock in her life is simply unfair. Just weeks ago, Erica received a necessary bone marrow transplant for her life. As a bi-racial individual, the search for the right donor was a difficult process, because very few minorities and mixed-race people have registered to donate their bone marrow stem cells.

Through the story of Erica's journey with leukemia, our documentary crew aims to bring awareness to the desperate need for bone marrow stem cell donations for leukemia patients, and specifically to compel people of mixed race and minority descent, to register to donate their bone marrow stem cells. This is now a VERY easy process that can save the life of someone with leukemia. My own grandmother died of leukemia, and my family personally understands this devastating disease.

So far, we have filmed 17 hours before, during and after Erica's big transplant, all with volunteer hours and personal funding. In order to continue with this documentary, we need financial support. Any amount will go a long ways during this initial stage! My goal is to raise $2000. 100% of the money will go towards the making of this documentary. Please help me achieve that goal by making a donation through this site:

http://www.globalnarratives.org/donate.html

If you can't make a financial donation, please consider registering to donate your bone marrow stems cells. It's now a much less painful process that can and will save someone's life! Also, an alternate way to donate is through a procedure that looks just like donating blood!

INFO on Donating:
www.marrow.org

Thank you very much for considering a donation to Global Narratives towards the Erica Murray documentary project!

Thank you,

Naomi Ture
Co-Producer/Director

Erica Murray
Co-Producer

Missed Marriage

2008-07-18T19:24:00.000-04:00

Four days ago, Uma and John became wife and husband. It was an occasion long-sought for so many reasons, not least of which revolved around the journey they have traveled together since an aneurysm burst in Uma's brain in January of 2007. They had become engaged the Christmas Day prior. Since the aneurysm, Uma has gone from a deep coma to a woman ironing out the wrinkles left by the aphasia (inability to speak) and paralysis. And from years before and through these often horrific 18 months since, John has been Uma's partner, her care-giver, her advocate, her lover, her cheerleader, her confidant, accepting her in all her evolving forms and potential.

As if the high drama of a wedding joining these two isn't enough, I have to say a word or two about Uma. When we met on the first day of freshman year as undergraduate roommates, my dear friend not only had not had a boyfriend prior but she honestly figured that love was not to be a facet of her life. We both spouted feminist theory from our bunk bed roosts, disparaged the archaic bonds of marriage, and all but vowed never to engage in such a misogynistic illogical incarceration. However, this was a woman who loved her Jane Austen, who had a weakness for the naughty and unlikely heroine finding a true love. This was private Uma and now we all know- the real Uma. This girl wouldn't take the easy route, wouldn't let any suitor into her heart without complete honesty and purity of intention. And that's why I'm so glad that she is now married to Mr. John Ballinger, better than a Darcy, a Bingley, or a Brandon.

Something like this would have been a part of the toast I was asked to give, but I was advised by my medical team that I'm just not ready to be in the company of so many people quite yet. My disappointment is huge, but I find solace in hoping that smart moves like that will allow me to be present when Uma pops out baby Umita or Little John. [Hee hee, Uma! We still gotta work out your "kid issues" before you can stop rolling your eyes at the mention of the little tykes. Ahh, come on, human mutts are fun!]

If you were there, please flood me with pictures. You can get my e-mail address from Uma or John.

Mazel Tof!

Part II

2008-07-09T11:57:00.000-04:00

Sorry for taking so long on that "to be continued". I recently was watching the "Sex and the City" movie, which my cousin was awesome enough to find online and burn for me, but it was burned on two disks. After all the drama and upheaval of the first half, the second disk wouldn't play! So, I know how you feel.

Vinay. The unfairness of his illness and early death renders indescribable emotion throughout my body- my stomach cramps, my chest feels hallow, and my skin feels prickly and foreign. Basically, as you know, when I first read that he had died, I... well, I lost my shit. I just cried and cried and cried. And, as I sniveled and heaved, I knew there was something off about my sorrow. I recognized that I had not cried like that when my grandmother died last November. I realized that I hadn't cried like that in perhaps more than a year, perhaps since the really hard physical times in 2006.

I called my sister and she patiently listened to me sob and when I declared, "This is NOT about me", she didn't argue. But it was. Of course it is.

I'm no psychologist, but I know that I've got issues. Everyone does, but the ones I have about my illness seem to be so carefully buried that I can pretend they don't exist. There is no room to complain, to feel sorry for oneself, to wail about your predicament-- there are simply way too many other people who have it worse. Plus, while cathartic, being negative is not an enjoyable way to live. It's so much easier to let my denial mechanisms insulate me from how much cancer fucking sucks. How unfair it is. How disruptive and painful it is. How fracking scary it is.

So, I hereby declare that I will find a counselor. So many of my friends swear by their amazing counselors. Hmmm... why then does my stomach seize up at the prospect?

Cover Girl

2008-07-02T15:31:00.002-04:00

Occidental College graduates who read this have already seen this way-close photograph of me on this quarter's Occidental Magazine. It has been a surreal experience to be featured in such a way. It's not People or the New York Times, but for me, it's enough to leave me rather embarrassed, way nervous, and feeling wholly undeserving. Thank goodness for the writing and editing skills of the mag's staff, but I confess that I, of all people, am mystified by their feature story choice. The alumni magazine is supposed to be about people who are out there in the world, kicking ass and taking names. I am currently kicking ass at playing games. I guess my main concern is for all the alumni out there who are fighting deadly illnesses of their own who say, "what's so special about that chick?" The article does its best to answer that question, but, in my ever-expanding exposure to other people with illnesses, particularly leukemia, there's nothing we can do but fight. We have to advocate for the National Marrow Donor Program- our lives depend on it. Plus, an strong empathy for others looking for stem cell matches (I would assume) is unpreventable. Here are some of my favorite cancer rock stars out there:

Omg. The first link I wanted to post was to a young man named Vinay, who was a patient at Dana Farber in Boston, just like me, and has worked tirelessly to augment the bone marrow donor list. He too relapsed with leukemia at the beginning of this year and had a mismatched bone marrow transplant. His site gets countless hits per day and he has been featured in various media, including a documentary entitled "The Truth About Cancer" on PBS. When his page, www.helpvinay.org, opened, it said that he died on June 25.

I am lost. Devastated.
I'll finish this later.

Meditation

2008-06-22T21:51:00.000-04:00

Inhale. Exhale. Inhale. Exhale. I have started meditating. Some blog I read suggested that you commit to daily meditation for 21 days before you decide if it's right for you. This morning's lotus-seated enterprise marks Day Numero Uno for me. I used a CD with a smooth male voice frequently reminding me to think about nothing except my breathing. Inhale. Exhale. I found the experience relaxing, but my mind invariably strayed to other things besides, as Mr. Smooth Meditation suggests, the feeling of air on the tip of my nose going in and out (couldn't discern that one all) or the rise and fall of my chest.

I've heard so many good things about meditation, from its ability to create space in our bodies to make room for healing to moving your mind away from physical pain (or itches) to simply adding a certain calm to the practitioner, whereby each challenge that comes their way seems a little more manageable. I'm down with these. Sign me up.

OK, my friends, family, and I have been blogging here for over two years. All we do is give, give, give to you readers. Now, it's time for a little homework assignment for YOU. =)

What I would love for this post is to hear from anyone and everyone out there in this crazy cyber community who reads this to comment on the following questions:

Do you meditate?

When and how often?

Do you use any tools, such as music, a guiding voice, a specific visual item to focus on?

Why do you do it and has it changed your life in any way?

Thank you so much!

40 Days

2008-06-15T19:42:00.001-04:00

Noah's flood was caused by 40 days and nights of rain. Goliath came to the Valley of Elah every day for 40 days until David came and bested him. Jesus fasted for 40 days and nights in the wilderness. Never thought I'd be so appreciative of that seemingly special number, but I now have 40 days left until I face changes of similarly biblical proportions. (Ok, maybe not biblical, but epic. Well, maybe not epic, but pretty great.)

Better than a birthday... is realizing that I am half-way to my 90-DAY-MARK. Around 90-100 days post-transplant, I get another bone marrow biopsy to confirm conclusively that my body is 100% my donor's cells and that there is no cancer. From my counts and light graft-versus-host-disease, they are all but sure of these things now.

Why on earth would I be excited about a fully-conscious bone-drilling procedure? Well, the prizes earned at that time will revolutionize my existence.

My "Hickman" catheter line will be removed from my chest. I can only assume that means less visits to the hospital in general since they can't prick my veins twice per week before they collapse again. It will mean much greater ease in bathing, less home maintenance of the port itself, and one less unsightly piece of sickness evidence.

A few days ago, my friend Abby gave me this wind-up nigiri. It rolls and spins and represents the fact that in another 40 days, I can eat whatever I want! Taking care to be sensible about crowds and dirty restaurants (is it only Southern California restaurants that has those genius A, B, C postings in the windows to tell customers their health inspection status?), I will be able to enjoy the JOY of relaxing at cafes, the CONVENIENCE of restaurant dining, and the belated PLEASURE of exploring my new area's eats.

But, how can I eat if I have the pink Darth Vader mask on? Glad you asked, because that will be the greatest of the three lessened restrictions. Currently, I don't go outside. Yeah, I really didn't expect that I'd opt to be such the recluse, but I only leave to go the hospital twice a week. I hate wearing my mask THAT much. It is hot and cumbersome, muffles attempts at speaking, lessens my air intake, and provokes visible discomfort in people I encounter. With the exception of medical facilities (isn't it so ironic how dirty hospitals are?), I have about 40 more days of this barrier between me and fresh air.
The other great part about that is we'll be able to OPEN OUR WINDOWS in our apartment. While outside hosts temperatures in the 70s, our oven climbs 15 degrees higher due to a greenhouse incubation effect. When my skin is rashy and itching (most of the time these days), this heat is intolerable. So, big YAY for no more mask in 40 days!

P.S. Happy father's day to all the dads out there and to my own, whose love, protection, and good humor I feel to this day.

June 4th

2008-06-05T17:51:00.004-04:00

At precisely 0747, 29 years ago, the sweetest most beautiful baby girl arrived in West Vancouver British Columbia. She was the cutest little baby weighing in at 6lbs 10 oz with the most engaging smile ever. Today, this same lovely little baby has metamorphized into a wonderfully strong, intelligent, inspiring and beautiful young woman. She has made me so proud with all her achievements, travels and accolades. As Jaci reads this and giggles over my fawning of my first born, as sappy as this sounds, being her mother, I am allowed to praise her as I see fit! =)

To be on hand to celebrate this auspicious occasion, Jamie flew in from LA yesterday and Jaci from Boston. To start off the day, Jaci cooked and served her a delicious breakfast burrito. Katie came over to join the festivities mid-morning and all enjoyed long life noodles for lunch. This is a traditional Chinese custom that most families observe to wish good fortune and long life to the birthday person. Abby and Naomi came by just in time to savor some yummy brownies. Jamie and Jaci prepared a gourmet burger dinner with all the trimmings - corn on the cob, guacamole, baked beans, avocado, onions and dills – everything Erica can have from her low microbial menu. And for the grand finale, Jamie baked her famous apple sauce cake topped with whipped cream (yup! Its non dairy!).

As for well wishes, she had aplenty. Calls and emails from numerous friends and relatives from near and far kept coming all day long. UPS and Fedex were busy with packages galore – from Anai, Uma, Kathy, Katie, Sally, Linda and Adam, not to mention the big box (containing something red – good luck color – that she’s been wanting) that her friends had chipped in for. All in all, it was a grand day for our girl. She had a great birthday!! And we wish her with all our love for many many more to come. We love you Sweetheart…

coming out fighting

2008-06-02T19:30:00.002-04:00

Last week was all about the itch, this all-over-body relentless itch, which left me powerless to resist the myopic pleasure of scratching. No sooner would the relief (and guilt) of satisfying the intense itch on my forearms wash over me when the skin on my chest would grab the baton and start its own sizzling temptation. I know, I know, the more you scratch, the more you itch, and round and round you go. The nurses said I simply needed to break the cycle with soothing cremes. But topical anti-itch potions were proving futile and a slowly worsening rash creeping up my arms had me worried. When all of a sudden, my toes were struck by intense and mysterious burning pain (started in the shower of all places), we called the hospital again. Because hands and feet are two of the places Graft versus Host Disease likes to originally manifest itself, they asked me to come in.

They still weren't too worried about my rashy arms, claiming that the kind of rash it was (bumpy, itchy) was not characteristic of GVH. And the itching was more likely a fun side effect of one of the medications I'm taking than of GVH either. (which med? how could we ever know?) But my red toes and aching feet, in combination with the above, plus a not-perfect GI tract, led to the diagnosis of mild GVH, the disease I had felt trained to fear and do everything in my power to avoid.

What's this now? "A little GVH is a good thing"? Apparently, although it is indicative that my graft or donor cells are attacking my own body mistaking the natives for invaders themselves, it proves that my graft is active, kicking butt and taking names. I imagine a little cowboys and Indians battle going on in my pelvic bone (where I visualize my marrow cells hanging out most often though their offspring are actually coursing through my entire bloodstream). The graft cells are of course the westward moving cowboys walking with bowlegged machismo, attacking peaceful Indian campsites just to prove their virility and claim their new frontier. Leave my Indians alone, dumb cowboys! Can't we all just get along?

This is, of course, an inane metaphor because "a little GVH is a good thing". A little Trail of Tears- not such a good thing.

Another good thing is that the four additional medications given to me to deal with these symptoms have succeeded in virtually eradicating all my previous discomfort. I feel very good in body and spirit.

Lost and Found

2008-05-28T14:25:00.001-04:00

First thing's first. THANK YOU. For the cards and the emails and the Facebook messages. For basically exhausting that Amazon wish-list that Jonathan set up. There were quite a few anonymous gifts too-- including an expensive massage device!-- for which I cannot extend my gratitude to the giver directly. Please take this general thank you message to be directed at all of you who make mail-time the best time of the day. I am humbled and, not to mention, so excited to read all these books, listen to all the music, and massage my neuropathy-ridden feet throughout this convalescing period.

Day +29 Post-Transplant. Physically, not too much to report: eating is good, digestion is finicky, skin is itchy and rashy, body is tired. Working hard to drink the recommended 3 liters of fluid per day, but failing daily (trying to flush the kidneys to prevent them from getting these bloody sores). Also failing frequently at getting out and taking walks, mostly because I detest wearing my mask. Enjoying a few visitors. Taking lots of medications.

But mostly, what I'm doing, between all of this other stuff, is.... watching Lost. I'm not really sure what's going on with the fires in the Santa Cruz mountains, but I sure know about the fire that Walt set to the first raft because he didn't want to leave the island. I have one ear open to campaign trail (btw, Jaci got to shake the man's hand in San Juan, Puerto Rico, last weekend; she reported that although the day was stifling and he'd just given a riveting speech, his handshake was cool and soft), but my other ear is firmly planted on the little clues that Ben gives away about where his people came from and why they prefer to live in the barracks on the island. My heart goes out to the victims of all the calamities in China and Myanmar, but a piece of my heart is reserved solely for the sexy Sayid, the ex-Iraqi communications agent who is smart, strong, and always knows how to find the truth. Why he fell for the spoiled Shannon, I'll never understand.

Ahem. Sorry about that. My life is pretty simple right now- lots of Lost. I'm jamming through Season 3 right now and am a little nervous for what I'm going to do with this addiction when I reach the show's current place in Season 4. I get the shakes just thinking about it.

the breakout

2008-05-19T23:57:00.000-04:00

I offered my attending physician to cook her and her husband a romantic meal of their choice. I offered to compose her a song in whatever genre of music she most favored. Then I just flat laid out all the most cogent reasons I could summon of why I should, please, please, go home as early as possible. Not sure which worked, if any, but word on the ward of my bargaining seemed to reveal that she has a funny bone and, well I figure, if I was well enough to cajole and create, maybe I was well enough to leave.

Ahhhh. So, on Sunday afternoon, day 19, I was freed from my prison. It really had grown to feel like an incarceration from freedoms that would bring both health and happiness, such as restful nights' sleeps and diverse healthy meals, so I couldn't be happier to be out of there. I feel very blessed to have recovered at such a rapid rate without any dangerous complications.

Then, another boon. I was told to expect to return twice daily to the hospital to be tested and to receive any necessary transfusions and medications. [While I was considering the economic value of possibly trading in our car for a Prius for all of the expected driving, even commuting trice daily didn't seem to compare to the discomforts and indignities of living there.] However, today, I was taught how to administer a certain drug at home and- get this- my new schedule is Monday, Wednesday, Friday mornings. Total. I cannot believe this unexpected extension of freedom.

While I am home and feel very liberated, I am, of course, still super restricted. My diet is still low-microbial (but my Mama's food is phenomenal even so); I have to wear that pink Darth Vader mask if I even step out of our apartment; and cleanliness and symptom maintenance are still paramount. They say there is a 90% chance that I'll be back in the hospital at some point for a fever, a rash, or other potentially more-grave-than-it-sounds setback. Still, I am so happy to be OUT for now and hope that I can take care of myself enough to steer well clear of the hospital for as long as possible.

Lordy, there is no place like home.

Boo Rules

2008-05-14T19:51:00.000-04:00

Day 15 - Erica’s WBC count continues to slowly rise to 1.7 (although her ANC dropped to 500—totally normal to fluctuate at this point) and her platelets are up to 48K. She is definitely more alert today during her waking moments but continues to nap periodically throughout the day. She stopped her last antibiotic today making her a bit closer to the goal of being homebound. But, her appetite is still not quite there… Until she can get off her nutrition IV, she will need to remain here, a thought that literally brings her to tears.

Since not much has changed, I thought I would take advantage of this blog entry to tell everyone about her new life for the next two and a half months. We’ve thrown around the terms “rules” and “restrictions” and “limitations”, but never quite elaborated on these. So let’s start with dietary restrictions: Erica is not allowed dairy until the docs say it is ok to slowly reintroduce to her body. She enjoys soy products though! Oddly, and rather counterintuitively, she is not allowed any fresh fruits or vegetables. Everything has to be processed and consumed hot to kill any bacteria that may be lingering on the food. Most people never notice if a piece of lettuce in their salad actually had some bacteria on it since we have fully functional immune systems that cover us, not so for E. During this time period, no restaurants at all which will put our Mom to work in the kitchen at home! I must admit though, lucky Erica! Mama can definitely hold her own in there.

Many of you know that while she’s in the hospital, all docs, nurses, and visitors are obliged to don masks and smocks at all times to prevent airborne germs. At home, her counts will be higher than they are now, so (usually) masks will not be required. Again, visitors are not encouraged during these two and a half months. Needless to say, she HATES this. And I’m sure many of you have received groggy nighttime phone calls from E saying how desperate she is for you to come visit her and force you to promise to hop on the next flight out to SFO. I’m asking you to please ignore her requests… Understand that for now, the best thing for her is minimal exposure to multiple people’s germs and bacteria. I know this sounds harsh to ask you to not visit and to even ignore her begging you to come, but do realize that you’re helping her more by staying away for a couple of months. So gently make up an excuse but be kind to her… She is really eager to rejoin society and for anyone who knows E personally, you know that she is not one to sit around and vegetate for long! Even those of us who will come in contact with her during this time, know that the doctors said not to be with her for many hours straight sharing her air. Take a walk, go to the store, or make up an excuse to leave for a while…

Probably she’ll read this blog soon, and angrily remove it. So commit it to memory! Take away from it that the best help you can give Erica right now is lots of emails, cards, phone calls, and Skyping. I’m sorry to spoil people’s plans to come visit, but just postpone it until August—besides SF is perfect in the late summer. J

Thanks for understanding… I’ll blog again soon, hopefully about some good news!

...getting closer...

2008-05-14T11:23:00.004-04:00

It’s funny how a day can get away from you when all you’re doing is watching your sister sleep and slipping through pages in a magazine… sorry for not posting yesterday.

Her counts have been following their rising pattern getting her ANC to 600! This meant that yesterday was the first day since her BMT that she was able to venture outside her room. We strolled around the nursing stations and circled the floor a total of three times yesterday—slight liberation, but one step closer nonetheless.

She is still a bit loopy from her meds although they are lessening her dosages one by one. Ideally, she will be more coherent and even start eating. Since she straight-up refuses to eat the food at Stanford Hospital, I am home making spaghetti… (funny side story: as a nurse was walking out of the room yesterday, she asks Erica, “Is there anything else I can get for you?” and she says, “How’s your spaghetti?” The nurse is utterly confused by the question, so Erica follows up with “You make a good spaghetti sauce.” My mom and I can’t help but laugh at the confusion… Nurse: “I do?” Erica: “Yea.” Nurse: “uhm.. [looks to Mom and I for support, we offer none.] I make good spaghetti?” Erica: “Yea.” She seems slightly flattered but unsure how her patient would know her culinary abilities… Finally, we step up and interject that we will be happy to make Erica spaghetti and Flustered Nurse exits.) So, I’m home making spaghetti.

In order to break out of E131, Erica needs her counts to be higher, to be able to eat sufficiently, and no longer require IV pain medication. It is so good to hear that her counts are rising meaning her new marrow engrafted!! So now, we wait….

When I get to the hospital, I will report on today’s counts and let you know how much closer we are to having her out of the hospital and back home…

p.s. E loves to check emails, even if she doesn't always respond back! So, blow up her inbox!

Humbling

2008-05-12T23:31:00.000-04:00

I finally made it to Stanford to be with Erica, but according to my mom, today is the most “out-of-it” she’s been for the past week or so, special thanks to the mix of Ativan, Dilaudid, and Benadryl. As previously reported, she has moments of lucidity (I’m talking 30 seconds to a couple of minutes) but then falls back asleep for about 30 minutes.

For those of you who follow the medical speak, her WBC is 1.1 today, HCT is 30.3, PLT is 10K , and the ANC is 450. To translate for everyone else: WOOHOO! Progress! Basically, the docs hope that tomorrow she will be able to leave her room (donning a heavy duty mask of course) and there is even talk of her being able to come home this weekend or early next week. This is contingent upon whether she can swallow food and keep it down long enough to get nutrition. As of today, Erica tried to eat small bites of various foods, but the pain to swallow was too great. On the up side, she didn’t throw anything back up… Her lips are swollen and her mouth still has many sores, but the nurses say it’s getting much better. She is well enough to shower alone and this remains a good sign.

On a personal note, I found today to be difficult for me… I have always been able to handle the blood, the puke, the BMs, etc. I fancied myself a bit of a pro! But today I realized that I don’t really know how to help her anymore… my old tricks don’t work if she’s not awake and since I’m not up on all the daily meds, I feel slightly useless… Our Mom has been here every single day and I think Erica has attached to her now the way she did with me two years ago. Since I came in this afternoon, our Mom was able to get some necessities done (e.g. laundry and a real meal!). However, when Erica would wake up randomly throughout the day, it was our Mom that she called out for… She asked for her repetitively and reminded me of how Mom does things around the room and that she knows where things are, etc. I really felt out of practice and sad that I can’t make her feel better like when we were in Boston… on the up side, when she was more lucid in the evening, we were able to engage more and goof around a bit.

Since I now know what it feels like to rely on blog posts to know what’s happening in E131, I will do my best to report daily. So forgive me now if I’m redundant tomorrow.

Until then… peace.

One tough cookie!

2008-05-07T22:53:00.005-04:00

Imagine the worst tooth ache or mouth sore you have ever had. Take that, multiply it by 20, and then imagine that the pain is all over your mouth, throat, down your esophagus and in your stomach. This is called mucisitis and it is caused by one of the chemo’s Erica is being given.

Imagine waking up every morning knowing that all you have ahead of you for the day is a constant battle against pain, nausea, and the sleepiness and “drug brain” that comes with all of the pain medications. This has been Erica’s reality for the past week and will be her reality for the next week or so.

Imagine being a prisoner of your body. Not knowing from one moment to the next whether or not you are going to have to throw-up, use the bathroom, or succumb to sleep with absolutely no warning.

Her BMT team comes in every day telling her that she is doing well and that everything that is happening is “to be expected,” but that doesn’t help relieve her pain. She is facing each day with all the strength and determination she has, but as each day passes, it gets a little less.

The past few days have been a balancing act of finding the proper dosage to manage her pain but not so much that she is loopy and out of it. We have yet to find that right balance. There are moments where her head is clear and her pain isn’t too bad. But the majority of her time right now is spent sleeping off all of the meds. All that she can really do right now is just get through it.

Her white blood cell count will start coming back up (it is currently at .1 and we need it to be 4.0-11.0) and once that happens her body will start healing itself and she will start to feel better. The plan is for her body to start healing mid to late next week, to re-introduce foods and have her keep them down, and to keep her infection free. Once that happens she will be able to head home.

There is no way around it, the girl is one tough cookie. She has her weak moments but I think, scratch that, I know they are fewer than most of the rest of us would have. In comparison to the darkest days of her chemo-induced depression back in Boston, she is coping very well. However this round of nastiness (sorry but there is no better word to describe it) is throwing her for a loop.

Since her white blood cell count is still non-existent, visitors are still a no-no, but rest assured that she is being very well taken care of by her Mama. Judy is an angel in the true sense of he word and is doing an amazing job caring for our girl. If any of you have a moment, please take the time to send her a little note or picture. Mail time is her favorite time of the day and she still has plenty of wall space here in E131.

Erica’s mailing address:

Stanford Hospital and Clinics
E1 BMT
Attn: Erica Murray, E131
300 Pasteur Drive
Stanford, CA 94305

A Body in Escrow

2008-05-04T17:59:00.003-04:00

We all have no more permanent real estate than our bodies. We go to school and the gym to make home improvements; we slather on cremes to protect the decks from weather-induced decay; we sometimes find infestations that only professional pest control can heal.

And once in a while, only rarely, we put our bodies up for sale. You've tried everything else, and the only recourse left is to transplant out the current family and hope that a new one will treat your number one asset a little better than you can.

My body had been on the market since February 2006. Despite the nine-million registered home-seekers, I could not find that perfect match. Finally, my real estate agent team suggested that I settle for this European woman who loves busy clashing wallpaper and piles of unorganized clutter. I had to suck it up that the new person running the show at my house wouldn't be my perfect decoration match, but maybe crazy wallpaper is coming back into style?

So we shook hands on April 29 and she immediately started bringing her belongings into the house. We agreed that she wouldn't officially move in nor move in her family and pets until my house and I felt a little more comfortable that they would somewhat respect the way I'd had things for the past 28-years. So, we're keeping some chemotherapeutic controls on her and her polka-dot mauve prints. Then, if we're all ready, she'll move in and start really taking over the place starting around May 14.

In the meantime, this period of escrow has turned my abode topsy-turvy. I'm trying to be the best hostess possible, but I'm operating in Opposite Land. All the things you'd normally be advised to do during difficult transitions do not apply here.

"Eat nourishing foods and drinks." I'm not eating anything, food consumption being quite the awkward sacrifice for a gal who loves to shop for, prepare, cook, share, and eat for three squares per day.
"Try to keep your blood pumping for both psychological and physical finesse." No exercise. Being confined to one room is rather limiting in the mileage category.
"Go soak up some Vitamin D." Sunshine will be a danger to me for the next year because my skin will be very sensitive and Graft V Host Disease often manifests itself in the skin.
"Laughter is the best medicine", true, but when you have sores and mucusitis, a peal of laughter can lead literally to tears.
"Rely on your family and friends." Friends help people through their trials normally, but without a functioning immune system, I have to restrict the contact I have with people severely.
"What's good for the bottle,..." When I see someone nonchalantly toss a glass can into the regular trash, I cringe. Recycling has been drilled into me as an easy civil responsibility. However, at the hospital, the utmost in cleanliness takes precedence and so I am having to retrain my brain to toss out perfectly good items. Ouch.

Sigh. So, here I wait, letting the minutes of escrow tick by, their uncertainty drowning out all other sound. I have grown rather attached to my "home" over the years and I really hope to be on the right and most direct path toward its best laid plans.

Oh, and if you get a chance-- por favor drink a cerveza para mi hoy! Feliz Cinco de Mayo!

Day 4: Card Shark

2008-05-03T23:44:00.001-04:00

If how Erica is playing cards right now is any indication to how she is doing overall, I think we can say she’s in pretty good shape. She whooped my butt in rummy today, four games to none. I wish I could say I let her win, because her mouth hurts, she’s in the hospital and is on pain medication, but I can’t :)

Today, Erica has slept more than the past two days. When she is awake, she is at full attention, but she has been sleeping quite a bit, my guess being because of the increase in pain medication. She is on a constant drip now, but also has a button for when things get bad. Most of her pain comes from the mouth and throat area where the sores are starting to run rampant. MOSSESS is in full effect. She has a slight skin issue with her left thumb, but as of yet, this is it for the skin problems (knock on wood).

That being said, she is still doing excellent. Vitals are steady, no fevers yet (knock on wood again), she is almost as quick to smile as normal and, well, she schooled me in rummy. She was really hankering for a stroll around E Unit again in order to break her course record, and for a change in scenery (plus she had the energy) but we found out that our little saunter of the other day was not ordained in the Stanford Hospital and Clinics Bone Marrow Transplant Unit Post-Transplant Manual of Pretty Useful and Not Always Mentioned Rules and Regulations of Post-Transplant Standard Operating Procedures (Pre-Engraftment). Rule II.2.7932b, paragraph V.6y, line 3b states: No leaving the room. So, with that limitation in place, it makes things a little tougher for the next few weeks (both physically and emotionally).

She continues on her fat and vitamin IV diet, for which we are still waiting to hear how many calories she is receiving (Erica says it’s purely out of curiosity, but we all know she’s watching her waistline ;) ). She had a popsicle today and will add sherbet to her regimen soon. Her favorite thus far is ice-shavings with fruit juice on top (aka snow cone, Slush Puppie). The cool, refreshing flavor feels good on her sore mouth.

Okay, going to see if I can challenge her to rummy again (and get beat down)…

Day 3a: Hericales

2008-05-03T04:52:00.003-04:00

Folks, we have a little Hercules on our hands. Two days ago this young woman was lying in a stupor from a BONE MARROW TRANSPLANT, so much out of touch with reality that Obama could have won the election and she wouldn’t have even batted an eye. She might have even thrown up when waking up to hear the news.

But today, my dear readers, today, was even better than yesterday (take that Ice Cube!). Despite an ever sorer mouth, which has caused the PC of the PCA to go to a continuous drip (with a little PC for extra flavor), Erica's medicated-induced sleep was interrupted by her own body’s desire to stay awake! It probably did not hurt that she got platelets, which tend to cut down on bleeding and give her a bit more energy. And, because of all these waking hours, our newly-dubbed Hericales carried out 12 labors as a penance for not being able to sleep as much today. And much like Hercules, Hericales can only be seen as being great for having carried out these 12 labors:

1) Took a shower
2) Started a crossword
3) Wrote some emails
4) Ate applesauce
5) Watched an episode of Heroes
6) Made a few phone calls
7) Sang the entire “Yes We Can” song
8) Learned to use MOSSESS
9) Untangled herself in record time from a mob of cables (aka IV lines) that look worse than what you would find behind your television
10) Used up an entire bottle of saline solution from rinsing
11) Got out of bed at least a half-dozen times.
12) Did 15 minutes of physical therapy with a Thera-Band (!!!)

Even though she completed these Herculean tasks, she still needs your lovin’ as the road only gets tougher during roughly the next two weeks. So, please write!!!

Stanford Hospital and Clinics
E1 BMT
Attn: Erica Murray, E131
300 Pasteur Drive
Stanford, CA 94305

Day 3

2008-05-02T16:03:00.003-04:00

Lots of happenings to report today from E131.

Not having been at the hospital on Day 2, I have to comment on the major improvement in Miss E’s energy level and overall wellbeing that I am witnessing today compared with Day 1. When I left the hospital on Wednesday, I was terribly worried about how she was going to cope throughout the night, without us there to help her during her awakened moments. As Josh’s account illustrated quite well, Day 1 was a very hard one for Erica. Though she was heavily sedated, the 36 hours following her transplant were among the most challenging that she has faced in her 2+ years of treatment.

Thankfully, today is off to a great start. Miss E rose shortly after I arrived at 8:30am, and showed a tremendous amount of energy throughout the morning. With Judy’s help she rinsed out her poor mouth and throat, which bothered her quite a bit throughout the night, but that was the only help she needed to get the day started. She completed the rest of her morning routine independent of Judy and me – brushing teeth, showering, dressing in fresh clothes, opening mail, etc. We no longer have a “Sleeping Beauty” on our hands (although as I write this at nearly 11am she has dosed off, presumably tired from her valiant effort a few hours earlier), just a “Beauty”.

The Doctors came by to do their usual morning check-in. They confirmed for us what Miss E had suspected, that her mouth and throat soars had slightly worsened since the day before. Although she was told to expect the soars as a result of the chemo, I think she has been surprised by their severity. Her white blood cell counts are very low right now. Yesterday and today they have been hovering at around 0.3, which is too low for her body to be able to heal itself. So, unfortunately, the soars will persist until her counts go back up, which is expected to occur anytime between Day 14 and Day 21. In the interim, the Doctors have prescribed a hearty drug, akin to Morphine, to ease the pain. During the day Miss E is coping very well without the drug, and, for now, only plans to take it at night.

Day 2: It Was a Good Day

2008-05-02T02:32:00.001-04:00

Ice Cube got it right back in 1993. And I can’t think of a better way to describe today. But, instead of “no hog”, there was “no naus”. And she wasn’t “freaking brothers everyway like M.J.” on the court, but you should have seen the way she tore around E unit today for a three-minute walk after being comatose the entire day yesterday. The nurses gave a collective heartfelt greeting as she emerged from her room with her 100-pound IV stand in tow.

And she didn’t have to use her “A.K.” either, because she had her PCA (Patient-Controlled Analgesia – morphine!). Far better stuff if you ask her. It wasn’t even sad that there was not any Yo! MTV Raps on, because she got through two episodes of Lost and watched Grey’s Anatomy. The only fool trying to “blast” her was nearly everyone for telling her how cute she looks. The Lakers didn’t beat the SuperSonics, but Joe Andrew switched from Clinton to Obama. And she sure did “grub out”. Some small pieces of fruit from a fruit cup and some apple juice. Unfortunately, she wasn’t as drunk as Ice Cube was, but then again, he just doesn’t know how wonderful it is to be almost drunk on saline solution, because she was a mouth-rinsing champ today!

It was a good day

Day 1: Sleeping Beauty

2008-05-01T01:48:00.002-04:00

That’s right. Our intrepid little adventurer has acquired a nickname in E Unit’s halls: Sleeping Beauty. And so right they are. On both accounts. If I had to guess, out of the 24-hour day, Erica slept for probably 22 of them. Every few hours, she wakes up quite groggily, never fully coherent or communicative, takes care of business, then falls ever-so-easily back into a medication-induced sleep that may or may not take her to dreamy places. Room E131 echoes with two sounds: the twirling pumps of her IV lines (3 to 5 at any given time) and the sound of her heavy breathing. An example below (she will kill me for posting this) of our Sleeping Beauty:

For someone who is sleeping for 22 hours a day, it’s hard to describe how being with them can be an intense experience. Katie, Judy and I rotated in pairs today being with her. Over 90% of the time, this means reading, working, listening to the IV pumps whirl, getting info from the nurses/doctors, staring at Erica, trying to ventilate your gown or juggling your laptop while trying to silence the beeping pumps, because they have air in the line, are out of fluids, the battery is dying or they are just acting ornery, while waiting for someone to come fix the problem (this is at least 40% of the time).

The other 10% is much more humbling. Usually, when Erica wakes up, it’s suddenly, whether by her own body or by a nurse or doctor needing to take vitals, give her medication, etc. It takes her less than 30 seconds to realize that she needs to either go the bathroom and/or vomit. Up to another 30 seconds to communicate those necessities, which is usually either five seconds in time or five seconds too late. Today, she vomited every time she woke up. It’s rough to see someone you care for who is half-coherent doing nothing but going to the bathroom or vomiting during their only waking moments. And she goes through the motions every time, never ceasing to amaze me in how courageous she has been throughout this entire process.

Even though she is vomiting and had a headache today, these are not bad signs. Quite normal with the chemo and radiation that she received. She is holding tight with her vitals, maintaining a good blood pressure and a perfect temperature, which are important. Because she is asleep so much and can’t hold food down, she is being fed intravenously. She has two bags, one is full of lipids, or the “fat” bag, and the other is full of the necessary vitamins she needs. Today being Day 1, she also received methotrexate, another type of chemotherapy that is designed, in simple terms, to keep her new donor’s stem cells from being too aggressive at the outset. She will receive this on Days 1, 3, 6 and 11 and why her new white blood cell counts will not start appearing until in between Days 14 and 21.

The best part of today, by far, was when I was chatting via webcam with Jaci and she was teaching me some basic sign language that Erica knew to communicate that way rather than through speech, which is sometimes difficult for Erica (because of her groggy state). When Jaci would say what she was signing to me, Erica would sign it in her semi-conscious state, hearing her sister from across the room. Very sweet. Even though she is comatose most of the time, you can still see her spirit coming through the haze.

Despite Day 1 being quite rough on Erica 10% of the time, she made it through without any issues as a result of the transplant, which we must all be thankful for. We can only hope that the other 90%, Erica was in a much better place (eating croissants and drinking a café crème in a café in Paris, for example ;) ).

Day Zero

2008-04-29T23:06:00.001-04:00

Our little hero has weathered the past few days of chemo in preparation for her transplant with little more than some tiredness as a result. All things considered, she has had an excellent preparatory period leading up to today, Day Zero.

Day Zero is a special day in many ways. Many people consider this a new birthday. This is the day she will be given a new immune system and will start the process of taking on a new blood type (if the donor’s type is different than Erica’s). The start of a new life. So, remember April 29th!!! (and June 4th too – her original birthday).

There have been some sobering, but also thankful moments as Day Zero has approached. For one, the nurses have reminded Erica of the possible side effects of her radiation and chemo treatment that will not be able to be fought off by her immune system, because she will have none until her white blood cell counts go up somewhere in between Day 14 and 21. This was all instigated by what I call the Mouth Sore Secretion Suction System (MOSSESS, not too unlike what a dentist would use) that was introduced to her last night. Mouth sores and dry skin/rashes are common following these procedures and can be quite unpleasant. These side effects have had her quite down in the past 24 hours.

What needs to be remembered, and something one of her nurses reminded her of last night, is that there are some people who don’t get donors, so that is why Day Zero, although a start of some difficult times, is mostly a cause for celebration. This is the chance to get her life back. The cause of hope for a promising future. So, if anything celebrate this day for Erica!

Day Zero officially began at 6:00 pm on the dot (so all you astrology buffs can check the exact time)… The doctors came in with what looked like a Bloody Mary cocktail mix in a bag and hooked it up to one of her lines. The “transplant” takes place like a blood transfusion. The initial flow was set for an hour, but because she had no immediate adverse reaction (great!), they increased the flow and she had sucked it dry within 45 minutes. Having taken some meds prior to the transplant, she slept soundly throughout the procedure and continues to sleep soundly, now over two hours after the transplant, with still no reactions. Now it’s just keeping tabs on her and making sure she doesn’t get any fevers or itching…

I wish I could tell you what kind of spirits she was in, but she’s been awake about an hour the entire day. Probably for the best.

Happy Birthday Erica!!!

Four eyes!

2008-04-26T14:55:00.004-04:00

For some odd reason Erica has always wanted glasses, and this week, her dream finally came true. Either as a result of four days of full body radiation, or as a result of a high-dose of anti-nausea medication, Erica has been experiencing very blurry vision this past week. When we were poking around the cancer center boutique yesterday she discovered that the glasses helped correct her vision and she couldn't have been happier ;) Erica weathered the radiation fairly well and had just a few minor complications that were easily treated.

It is now noon on Saturday afternoon and she is all checked in to E1, the Bone Marrow Transplant ward of Stanford Hospital. Currently she is sharing a room with another woman (no fun) but will be moved on Sunday or Monday when her counts drop so much that it will no longer be safe for her to share a room. At 2:00 today she will receive the first of two doses of a high-dose chemo called Cytoxin (so lethel that it has to be stored in its own locked room), on Monday she will rest, and on Tuesday she will have the transplant. She is doing as well as can be expected and still feels pretty strong and inexplicably looks even prettier with glasses. We will keep you all posted and let you know how the next few days go.

Meet Ernie and Stan

2008-04-22T20:30:00.008-04:00

Ernie stands about 1.5 feet tall and is kind of rigid in nature, not much unlike his namesake from Sesame Street. Bert is missing, but that’s okay, because I don’t think Erica could deal with having two such friends. Just too much weight to drag around. Bert’s lack of presence, however, has translated into Ernie becoming more temperamental and Erica has to keep him on a short leash.

Ernie is Erica’s saline bag. Yes, he very much looks like a wheelie that one would drag around an airport, but this bag will be a permanent fixture at Erica’s side until Saturday, keeping her hydrated during the radiation process, which started this morning and ends on Friday.

Erica will have eleven doses of radiation during the next four days. Each of these lasts a maximum of seven minutes. And this is where we need to introduce Stan. While little Ernie gets a bit grouchy from time to time and tugs at Erica’s catheter, Stan is just plain mean. Large and in charge, Stan looms huge on Erica’s horizon, staring at her right in the face.

Big, bad Stan is the radiation machine that irradiates Erica three times a day. As you can see above, he’s not pretty and does not get any points for being a nice guy. But, as we all know Erica, Stan is really not the top dog. Whilst large, he is still merely Erica’s younger, oafish step-brother, in a manner of speaking, zapping away the little nasties that are in her marrow. So there is no confusion, Erica has already sent him a message about who is boss.

The most emotional part of today was, at 7:30 am this morning, when they strapped Erica into the booth for the first radiation dose of the day. There was no worse feeling than to see this beautiful young woman being submitted to something as dreadful as radiation, even if for the greater good, without being able to do as much as lift a finger in aid but for a final little, blown kiss. The almost draconian setup of the booth, with straps, levers, hanging pieces of lead, made it appear that not much has advanced since Marie Curie carried out experiments with radiography almost a century ago. That, or she was going to be privy to torture techniques from the Middle Ages. But, the professionalism and knowledge of the radiation therapy staff at the Stanford Cancer Center helped prove that we are now in the 21st Century.

Those first seven minutes were some of the longest of my life, watching her on a video camera from another room. And this was a pittance of how long it must have been for Erica, holding herself up straight reminding Stan who was boss.

Today Erica has faced three doses of radiation. And has confronted each with a strength and grace that would make a bamboo proud. To boot, according to one nurse, she’s the cutest patient they have right now. But, we already knew that.

Three down and eight to go. And Ernie and Stan are watching her back.

"Make life go away."

2008-04-18T21:10:00.001-04:00

These were the first words uttered by Erica as she and I (Jamie) woke up at 5:00 this morning to get to the hospital for her port removal and catheter insertion. Another day of doctors and nurses and poking and prodding. There is no doubt that the girl is fed-up with this reality and who can blame her? She managed to have a few days of normalcy visiting friends in L.A. earlier this week, but now it’s back to life at Stanford Medical Center. The good news is that everything went very well, no complications at all. She is now back at her Mama’s house resting and awaiting the arrival of some friends for a low-key evening o’ fun.

As far as her schedule goes, she has two more days as a “free woman” as she describes it and then she heads to the hospital on Monday for radiation prep. Tuesday through Friday will be spent at the hospital undergoing full body radiation in preparation for the transplant. On Saturday she checks into the hospital for the transplant and starts receiving high doses of chemo for two days. Tuesday, April 29^th is BMT day. For those of you who aren’t aware, the actual transplant process is basically just a blood transfusion. Her BMT doc described it as “anti-climactic.” The time spent in the hospital post-transplant will be spent watching for signs of GVHD (graft versus host disease), watching for any signs of infection, getting her counts back up, and rebuilding her strength.

A quick update on visitors for the next 2-3 months. The general rule of thumb for post-transplant patients is to limit the number of visitors the patient has for the very critical 2-3 months post-transplant. It is recommended that Erica have a core team of caregivers and that other visits wait until after this period is over. No one can say exactly how long this will be, it is all dependent on how she is doing, but 2-3 months seems to be the number that keeps popping up. So, Judy, Jaci, Bess, myself and a few other close friends will be forming Team Erica and covering her round the clock. The reason the docs recommend against having more visitors is simply because with every new visitor, there is an increased risk of infection. It is a numbers game. For all those folks who were hoping to come visit Erica over the next couple months, my suggestion to you is SKYPE! Erica will have her computer and webcam in the hospital (we can’t promise she will always be up to using it) but it will be there to let her interact with everyone. For those of you who don’t have Skype, you can go to www.skype.com and download the free software. From there you just need to purchase a webcam available at any Best Buy or Circuit City.

As you can imagine Erica does not like the idea of not being able to see all of her family and friends that have stood by her, but she is the first to say that she is going to do whatever the doctors say and follow their instructions to a T. As soon as it is safe to start allowing other visitors we will let you all know. We will be blogging constantly and we are all available to chat on the phone if anyone would like more detailed updates. As soon as Erica is checked-in to her new “suite” at the hospital, we will post her new mailing address. Please, please, please send as many cards, letters, parcels as you like. She is a big fan of parcels. ;)

Identity Theft

2008-04-15T13:55:00.003-04:00

Check out this story from Discovery Magazine.

The level of physical and mental anguish this man went through astounds me. It makes me so scared, so very very scared. This story also makes me uncharacteristically angry too. This man did nothing but love life and ALL (an all-too-familiar leukemia) beat him down. Do you cringe when you watch a movie and see senseless and prolonged violence? Eric Drew was walking along (whistling, no doubt), when a thug called Cancer pulled him into a dark alley and beat the shit out of him. Why? Why this senseless destruction?

I'm sorry if this offends you, your religion, your sense of purpose, but Cancer makes me convinced that we are just tiny inconsequential specks on this tiny inconsequential planet. When a houseplant becomes diseased and dies, we shrug and we toss it out.

I feel like a random casualty of cells, an entity too mundane to allege a destiny.

freedom of speech?

2008-04-15T00:43:00.005-04:00

good stuff from the NY Times:

And only in America can a 46-year-old black man who just finished paying off his student loans be called “elitist,” a 60-year-old woman who with her husband has earned $100 million dollars call herself “middle class,” and a 71-year-old man who has received government paychecks his entire adult life call himself an “outsider.”

– Janice Hough, Palo Alto, Calif.

clarification

2008-04-12T19:26:00.003-04:00

I met with my Bone Marrow Transplant doctor yesterday and we are "moving forward". There is another donor in mind, with the same level of mismatch as the one that fell through. We DO NOT yet have confirmation of this donor, but the medical team is optimistic that we can assume the donor will come through. Apparently, the donor has consented, but we're awaiting medical clearance. Or is it the reverse? Honestly, the state of limbo remains...

Something interesting we learned yesterday is that the U.S. Navy partly funds the National Marrow Donor Program and they conduct research too! An admiral's son died from leukemia after being exposed to Agent Orange while serving in Vietnam. In addition, there is some connection between the carcinogenic damage caused by our bombs and other international nefarious warfare tactics and the NMDP. So, apparently, when after 9/11 and planes were grounded, the military were the ones delivering bone marrow all around the world. My BMT Doc said that was the only time they were really worried about getting the actual donor specimen after the patient had already been "prepared" with radiation and chemotherapy.

We are moving forward. Still, I'm keeping my fingers crossed.

Update from Bess

2008-04-11T02:08:00.002-04:00

Tuesday was Bone Marrow Transplant (BMT) 101 at Stanford Erica, Judy and I went to a class to learn more about transplants and get information regarding how to give her the best care when she leaves the hospital. (Erica cannot stop taking classes, she misses Fletcher too much!).

A few interesting facts we learned:

- Erica has to have her port removed and have a catheter put in on the other side of her chest. This will be done as an outpatient procedure prior to the BMT. Too bad because her port has not been a problem in the past.

- The day of her BMT is considered day zero. Today is -19 until her BMT. The day after her BMT will be Day 1. They call the BMT another "birthday." Like we need excuse for us to throw a party in a hospital!?! They don't know who they are dealing with. Instead of cake she gets an IV of "orangy/redish liquid" YUM! I guess we cannot bring in any candles either. We will figure out something. How about a pinata? Will security chase us out again!?

- When you come to visit both at the hospital and when she is home, you will be hosed down and bathed in purell. I am only slightly exaggerating. If you even think you have been around someone sick, you will have to wave from the street to get a glimpse of our gal. We will probably have masks for visitors and give you a duster to dust around! Antibacterial wipe anything you touch. Unlike the previous hospital stays, she will have visiting hours. 11 a.m. to 8 p.m. I will be keeping a calendar again. Please e-mail me and we can confirm visitors: ocken@stanford.edu.

- They recommend that she get out for walks. SPF 30 for everyone!

- Water rations? Not with Erica. They recommend that she drink 3 liters of water a day.

- She will be back on the low-microbial diet. Any suggestions for bland processed food? Send them our way. Have a favorite type of canned soup? Cannot live without a certain type of frozen food? Some canned fruit we missed that actually tastes good?

Not with any surprise, Erica continues to be out and about, has high spirits and is filming a documentary! Oh yes. TV wasn't enough for her. She is moving on. No surprise right? Nothing gets in her way!

Easter Eggs

2008-04-07T22:11:00.004-04:00

Growing up, I was not the sort of girl who couldn't wait to have kids. In my teens, I wondered if having children was not an ultimately selfish act in our overcrowded world and felt sorry for the countless women who battle every day to balance their roles as mothers with their myriad other positions. I've never stopped thinking about those things, but I do remember when that fabled maternal clock started ticking- LOUD. This wasn't a faint and gentle tick-tock; I began to feel like Alice's white rabbit: "I'm late, I'm late, I'm late!" Or rather, I suddenly realized and still believe to this moment, that I didn't just want children- I wanted a lot of them. "Cheaper by the Dozen" and "Yours, Mine, & Ours"- cutest movies ever. Twins? Triplets? Bring them on. Bradjelina's tribe: could you make me more jealous?

My grandma passed away last November. She was a mother of five amazing intelligent and loving children. In Chinese style, she was respected and spoiled in her old age. I thought, how wonderful it must be to have so many children, both to care for you and to be able to watch them develop into unique and accomplished individuals. My sisters are two of the strongest most special relationships in my life; what might it have been like to have even more siblings to cherish?

In 2005, thanks to a grant from the Avery Foundation, I traveled in China learning about the Chinese concept of "luck". One of the things I did there was get my fortune read. My i ching expert was a blind man who learned the art and trade of fortune telling to be able to support himself through his disability. He told me several things that rang true at the time and I chose to believe him when he told me that I had four children in my life's projection: two girls, two boys. How perfectly marvelous.

So, when, during Easter week here in 2008, I was told that I had four little eggs in my ovaries, I felt sure that these were my fated progeny.

But first, another flashback: I remember well when I was in the Emergency Room in Boston being rushed into treatment and a doctor apologized to me saying, "you should know that the chemotherapy you are about to undergo will most likely prevent you from ever having children". As he hovered over my gurney speeding down the hallway, he explained briefly that some people have time to store eggs, embryos, or sperm, but that for me, there simply wasn't any time.

Despite this heartbreaking news, we took various hopeful precautions, such as using "the shot" to protect my ova as best as possible from the toxic medicines I was taking. Studies for my age group were not conclusive: I'm not quite old enough for premature menopause to be a given, not quite young enough to be optimistic about the number of years of normal cycles I might still have. So, common with so many other unknowns related to this illness and treatment, I subconsciously chose not to mourn over a trajedy as yet unconfirmed.

A couple of weeks ago, during my hospitalized induction period here at Stanford, a doctor casually mentioned, "well, you know how you're going to be infertile after the required full body radiation, right?" No, I had not known that. Here it was, conclusive, unavoidable. I had kept a little campfire of hope and a sense of destiny burning in my chest and I actually felt like the wind was knocked out of me as my chest and eyes burned and I tried not to cry. There are thousands of things that could/should go wrong with my body, but few that I've been told will, without a doubt, without a wisp of hope.

Wait, you're saying, didn't you just say something about four little Easter eggies? Way to follow this convoluted time schematic, reader.

Ah, so with one month between chemo and transplant to pray to the fertilities goddesses, I turned to the Fertility Clinic at Stanford and asked them to do whatever they could to stimulate/examine/collect/harvest/protect/freeze/store any chance I might be able to have children in the future. I gave myself shots to induce ovulation and must say it was the first time I've ever been so excited to feel bloating! Through ultrasound technology, my doctor saw two little follicles in each ovary and my heart soared.

Then, at my next appointment, Dr. W was very quiet as she examined the ultrasound screen. To me, it was merely smeared black and white static. But, her silence and persistent search told me all I needed to know. With all the tact and compassion I could have hoped for, she explained that my ovaries were just "tired" from all the chemo I'd had, that they were "calm" and those four small bundles of hope from a few days ago had not developed any further. "Tired". "Calm". Pointless. Dead. It's hard to be 28 and have dreams dead.

Of course, I will adopt. Adoption was something I'd felt called to long before cancer. But, still, just like that unavoidable mysterious inner clock, I can't help but feel this profound and unshakable sense of loss.

School Pride

2008-04-04T22:12:00.009-04:00

From: Corey O'Hara [mailto:corey.ohara@gmail.com]

Sent: Thursday, April 03, 2008 1:21 PM

Dear President Bacow,

I want to thank you again for your support over the past week.

Yesterday's bone marrow drive was extraordinarily successful. The
national marrow registry representative, Betty, was particularly
impressed... a "good turn out" for a university drive is 70 people,
and she'd never seen anything like this. We registered 389 on the
spot, plus an extra 20 or so who will have to mail it in because we
ran out of the testing kits she had brought with her.

I guess no one had told Betty that Tufts is not your average
university. I think she figured it out soon enough, though. The
turnout and dedication she saw was so inspiring that on behalf of the
National Marrow Donor Program, she offered to cover all the costs of
testing, which would have been thousands of dollars. (The test costs
$52 per person.) We raised some money through individual donations,
but not nearly enough... Now the money we raised can go to Erica to
help her cover medical bills. (It won't go very far, but at least
it's something.) A lot of people deserve a lot of thanks!

THANK YOU.

I don't know what percentage of donors was non-Caucasian, but I have
to say, I was pleasantly surprised by how much support we had from
minority groups on campus, from the undergraduate student body, and
by the Asian community at Tufts in general. Students and faculty
came from all over. I recognized a lot of students from Friedman,
and I heard we even had a couple of veterinary students come in from
Grafton!

Erica was thrilled to hear of the support, and now we are all keeping
our fingers crossed that one of us is a good match. Thank you again,
and thank you to all of Tufts.

Yours,
Corey

The View From the Bay

2008-03-30T02:07:00.007-04:00

The segment is now online: CLICK HERE.

Tune into ABC channel 7 this Wednesday, April 2, at 3:00 p.m. to see me plug the bone marrow registry! I'll be a guest on "The View From the Bay", a San Francisco Bay Area daily program which features various personal/human interest stories. I'll be on with Yul Kwon, my cousin's best friend, the winner of "Survivor Cook Islands", and a tireless activist who tries to leverage his Survivelebrity to get people, particularly of Asian and mixed descent, on the National Bone Marrow Registry. If you don't live in the Bay Area, you can watch the show at 3:00 Pacific Standard Time HERE; just click on "WATCH LIVE ONLINE".

Upcoming Bone Marrow Drives- Check left column for details

2008-03-26T17:25:00.006-04:00

Let me know if you are organizing something or hear of any other efforts!

Thank you to the committee at Fletcher who are organizing the one there and thank you to Judy Murray, Lillian Sing (my Mom and Aunt) and the AADP who organized the ones at the SF Courthouse and Hall of Justice.

Disappointment

2008-03-21T23:06:00.005-04:00

Bad news: You're about to hear me sing. Imagine cats in heat, nails on a chalkboard, a screeching baby on a transoceanic flight... you get the idea.

Worse news: My donor fell through.

Video II- "If I Had a Real Good Donor": http://www.youtube.com/watch?v=DYUFB542Iak

Knock on Wood

2008-03-15T14:16:00.002-04:00

Thank you for all of your joyful comments. Having a donor, even a mismatched one, is indeed great news. Still, I have to admit I'm personally not celebrating just yet. What if my donor changes her mind? What if something happens to her? What if my next bone marrow biopsy reveals an unexpected twist in this narrative? etc. etc. etc.

So... I knock on wood every time I share the good news.

And, I am now out of the hospital- about six days ahead of schedule. Despite everything they forewarned me about, I tolerated the chemotherapy better than average and so they let me go home early. No major illnesses attacked my paltry immune system; only small infections afflicted my body; only one fever over the course of the induction.

Knock on wood.

At home now at my Mom's apartment, we are hosting many good friends who, thinking I would still be in the hospital, scheduled themselves to come visit this weekend. Of course, I am thrilled to be out of Room F038, but mostly we are just taking it easy anyway- hanging out, unpacking my things from Boston (all the boxes- plus all of the adorable and creative cards from Fletcher folk that Samina brought), and eating home cooking. If all continues to go well (AKA, my counts continue their upward trajectory and no funky fevers or anything) I am on track to begin "conditioning" for the transplant on the 14th.

For now, here's hoping for smooth sailing!
Fingers crossed, salt over the left shoulder, and lots of knock, knock, knocking.

Video Blog 1: Nothing's Perfect

2008-03-10T16:24:00.002-04:00

The Dog Days of Chemo

2008-03-04T17:49:00.002-05:00

It’s been a week since Erica last blogged and not a whole lot has changed. She still eats, sleeps, and Wii’s in her room here at the Stanford Medical Center. Each new day brings with it a new visitor and a new chemo-induced quirk about her body. As a result of the 5 days of chemo that she received when she first arrived at the hospital, her white blood cell count is very low, meaning that her body’s ability to fight off infection is at its lowest (but this is a good thing, it means the chemo is doing its job). On Sunday she woke up with some pain in her arm and started running a fever. The doctors have been expecting this to happen and are treating everything accordingly.

Yesterday Erica underwent another bone marrow biopsy. This time, the doctors were able to pre-medicate her and make the experience much less painful than the last. She made it through the procedure with her friend Josh stroking her hair, her Mom rubbing her feet, me (Jamie) holding her hand, and 50 grams of fentanyl/ativan making the triple derrick-rigging of her hip bone like a psychedelic night at Studio 54 (Erica’s words).

Right now it is looking like she has at least two more weeks here. The doctors need to monitor her very closely and watch for any sign of infection. She will only be released from the hospital when her doctors feel confident that her counts have risen enough to fight off infection. Best-case scenario is that she will be able to avoid infection over these next couple of weeks, but it will be no surprise to anyone if she does get sick as her ability to ward off bugs is non-existent.

Overall she is still feeling pretty good and enjoys visitors (especially those who bring good, hot home-cooked meals-- look at the crap they feed her!). She is incredibly grateful to everyone for their cards, e-mails, and gifts. Please keep the positive thoughts coming.

Ways to help

2008-02-25T20:52:00.002-05:00

Hi Everyone,
The support website that was started when Erica was first diagnosed has been updated. Please visit www.supporterica.blogspot.com to see the various ways that you can help Erica while she battles her way through this second fight against leukemia. If you have come up with your own way to help Erica such as a bone marrow drive or a fundraiser, please e-mail me at murphy_jamie@hotmail.com so I can add it to the support website.

Thank you!

Jamie

The Waiting Game

2008-02-25T14:33:00.002-05:00

Five five-hour chemotherapy treatments finished and now the waiting game begins. So far, I am still feeling pretty good; minor complaints but nothing too awful. I've been blessed with super visitors and an attentive team of doctors and nurses. Thankfully, I've been sleeping as well as can be managed with the various nighttime interruptions and haven't had to take those mind-altering sleeping meds which really fog up my brain. My diet here is very restricted and it does suck to be tied to and IV pole, peeing into a plastic storage receptacle, and rarely departing from my 10'x15' room. However, the real fun is coming in the next few weeks: fevers, infections, fatigue are all expected as my counts go crashing. What little hair I've proudly resprouted over the last year will again be orphaned on my pillow each morning. Sigh, but it always could be worse. I could lack the funny friends who bring me goofy gifts, send me Youtube gems, and make sure my last days of hairdom are not taken for granted.

a few early pics from the hospital

2008-02-21T15:42:00.006-05:00

Entering my ward. A sense of humor is paramount.

Lots of tests- from blood work to x-rays to CT scans to EKGs and echo cardiograms- to create documented baselines from which to monitor deterioration.

With low white-blood-cell counts (immuno-suppression), I have to don a Darth Vader mask whenever I leave my room. At least it's pink.

So far, I still feel great. Day one of chemo down.

Countdown Pictures!

2008-02-20T00:48:00.018-05:00

Feb. 19, 2008

Thanks to Mom & Bess for the updates. I'm here in the hospital now, grateful for my amazing friends who keep me organized and happy. Today was an easy one physically, but a little difficult emotionally. I'm used to a doctor and medical team who try to spare me the mortality statistics and the grimmer details. Here, I've already noticed a different brand of bluntness that sometimes jars my sensibilities. I do however appreciate their candor and believe that I can better care for myself and make decisions if I have all, even the petrifying, information.

Otherwise, so far, there are more things Stanford Hospital has in common with Brigham & Women's Hospital than different. I have my own room with a bathroom, shower, and constant hum of medical equipment. You enter through a double-door system which attempts to reduce the introduction of pathogens and there are a half dozen vessels with alcohol-based hand sanitizers stationed around the room. Visiting hours are 24/7 and there is a cot here for my rotating roommates. We have wireless internet, TV, DVD player, and (soon) a Nintendo Wii. The walls are spartan and partially covered by medical nodes and wires, but I'm sure we'll do some decorating in the weeks to come.

But before the many posts to come, all about the hospital, here are some pictures of the time between relapse awareness and hospital admission/incarceration. I took my last days of freedom seriously, because I knew that not only would I be stuck in the hospital soon, but, far worse, I would be again stuck in a listless and sick body.

So, encouraged by my peeps, I danced a Russian jig,

went snowtubing,

had a party,

ate a farewell New England meal,

picnicked in the sunshine,

played Guitar Hero and Wii,

hung out with my family,

rode bikes across the Golden Gate bridge,

and yesterday, went sailing out on San Francisco bay. As my friend Josh wisely reminded me when I was whining about having to go into the hospital, these are the days for which I will suffer. In order to have another perfect afternoon in a sailboat with my best friends, that's why I'm here in the hospital. Here we go.

I

At the hospital

2008-02-19T16:17:00.002-05:00

Erica arrived today at Stanford Hosptial (entourage in tow of course- Judy, Jonathan, Katie and me, Bess).

Photos to come. She is in good spirits and we are about to watch a movie. Treatment wont begin until tomorrow.

Mail time is always great. Please mail to the below address.

Stanford Hospital & Clinics
F Ground Unit, MC 5615
Erica Murray, Room F038
300 Pasteur Drive
Stanford, CA 94305

So far we have a great nurse, Jessica, and she was born in Canada just like miss E!

I will post photos and more information about what we have been up to later today or tomorrow. It includes video games, good food, sailing, and fantastic family and friends.

Barbaric

2008-02-15T14:14:00.000-05:00

Barbaric – Barbaric – Barbaric! Those were the words the PA said to me after she had performed Erica’s bone marrow biopsy yesterday at Stanford. Jaci and Erica have both shielded me from being with her when she had one of these procedures done in Boston as they felt perhaps I couldn’t take to see my child having an instrument being drilled into her ileac (pelvis) bone. They were right. To see her face grimaced with such intense pain and hear her cry out loud with tears rolling out of her eyes is definitely not a sight a mother ever wants to see. I know now why they have barred me from the room when Erica underwent this procedure. I tried to fix my eyes on her rather than the long needle being inserted into her hip, jerking her into excruciating pain. However out of the corner of my eye I can see when the needle is being extracted, again causing her to bite hard onto my fingers to stop herself from screaming. The needle is inserted again for more blood needed for testing the cancerous cells. After this comes the really really hard part when an instrument resembling a type of drill that actually drills right into her hip bone to extract the bone marrow and some bone chips. I can’t even begin to tell you how much pain and agony this must have caused Erica because even though local anesthesia was administered, she cried out several times in pain, flailing her legs and gripping my hands so tightly I lost feeling there. Seeing her like that, it’s impossible to stop my own tears from flowing.

After it’s all done, when she felt more like her stoic self, she turned to me and asked ME if I was all right. The tech that came in to collect the blood and marrow sample, turned around and remarked that it’s the first time he has ever heard a patient, having just undergone this grueling experience, ask another person how that person was. It is just the nature of my sweet and loving daughter to think of me first rather than the pain she is still feeling. How blessed am I.

After that terrible procedure, we had to go to have her heart checked to see how strong her heart is and to determine the chemo dosage she can further endure. It was interesting to see her heart pumping and the blood flow in the sonogram. That took another half hour. By the time we left Stanford it was rush hour traffic and I had a pretty tired lady in the car.

Yet after half an hour of rest whence she sipped some hot tea and snuggled in bed with a heated pad with her favorite word puzzle, she was revived sufficiently for an evening with family and close friends for a Chinese dinner feast.

Tuesday February 19, 2008, Erica will be admitted into Stanford Hospital for intense chemo treatment for four days. A week later, there will be another bone marrow biopsy to confirm that she is in remission. The rest of the time in hospital will be for evaluation of and treatment for any possible infection and/or any of the many side effects.

And so, we begin another episode in Erica’s long hard struggle against leukemia, this time against AML.

Finalized Admittance Date

2008-02-15T13:52:00.002-05:00

Erica will be admitted at Stanford on Tuesday, February 19th.

I will update everyone with an address as soon as I have what floor she will be on. Mail time is a fun time of the day :)

Thanks-

Bess

First Appointment at Stanford

2008-02-14T12:01:00.003-05:00

Yesterday, Erica, Judy and I (Bess Ocken) had her first appointment at the Stanford Cancer Center. We met with Erica's new doctor, Dr. Steve Coutre and a Hematology Fellow, Dr. Stevie Otis. There are a few things to report:

1. Admittance date is still up in the air. We are waiting on final approval from the insurance company and then we will get an admittance date. It is unclear if she will be in the hospital this coming long weekend. For all of you folks who are coming to visit, stay tuned.

2. When she does get admitted, it will be about a 4 week stay. I know she would love visitors and it would be great to stagger it across her stay in the hospital. I am coordinating a schedule so please e-mail me at ocken@stanford.edu with your plans. Also, if you are even remotely feeling sick, you won't be able to come into her room.

3. Some information about her treatment. The first 4 days of her stay she will receive chemo treatment. The rest of the stay will be the recovery period. This is a much different treatment than the first round as this type leukemia is AML and needs a different plan of attack.

This is definitely a hard time, but your well-wishes, prayers and thoughts mean everything to Erica. Please keep them coming and we look forward to seeing you at Stanford.

I will report back when I know more.

Bess

DFCI

2008-02-06T11:34:00.000-05:00

I used to think that my last visit to the hospital could not arrive soon enough.

I have just come from Dana Farber Cancer Institute, my home away from home these past two years. When I first heard the news last Wednesday, I cried, but my peepers had remained try since then- until today. Saying goodbye to the nurses and staff was very difficult. Realistically, most are people I will never see again. It was my first moment too since I learned of the relapse when my gut questioned if moving to California was the best idea.

To be true, I never liked to get up at 6:00 AM to go get my chest pricked and my bloodstream tainted, but the team at Brigham & Women's Hospital and Dana Farber honestly and truly made it possible. If they had been even slightly less than their patient-oriented, friendly, informative selves, I might have used the hassle and stress of my weekly visits as provocation for quitting. Long ago, they stopped asking for my ID card to check in; they reserved private rooms for my treatments even when I was well enough to sit in the chemo-armchair-factory (so depressing!); nurses were always friendly and always made time to answer all of my questions; they'd bring me heated blankets and water without me even asking; they'd page whomever I needed at that moment whether that be a social worker, a doctor, a nutritionist, the scheduler, or even a holistic healer. It's not much, but I always felt like a VIP at Dana One Infusion Room.

Aware that I have been spoiled at DFCI, I'm nervous to be changing all of this and I'm sad to say good-bye to these people who probably don't even realize how important they have been to my life.

Our plan

2008-02-01T14:51:00.000-05:00

As I sit at Erica's dining room table in Medford, watching her, Samina, Katie, and Addie pack up boxes full of books and pictures, I have to admit that I thought I was done with blogger.com. But here we go again...

So, yesterday morning, Erica and I went to Dana Farber Cancer Institute to talk to her doctor to try to understand the whole situation and options from here. Turns out there are no options, so here's the plan: Erica is going to return to San Francisco and live with our Mom in Burlingame. She will hopefully get treatment at either UCSF or Stanford. By living in the Bay Area, our hope is that our family can all pitch in and help my Mom and local Cali friends can come more often, etc.

Medically speaking, if all goes ideally, here's the tentative plan: Erica is admitted into the hospital for induction phase. Since she needs to go into remission for a second time, it may take longer this time than the 3 weeks inpatient two years ago... we're thinking it will be 4-6 weeks to get her back into remission. Then she gets a break of about three weeks. She then returns to the hospital for the transplant for 3-6 weeks, and goes home for a quarantine phase of roughly 6 months. Now, let me explain...

For those of you who remember that she did not have a bone marrow donor match, that is still the case. However, two years ago, the only thing that would've been a better outcome than the chemotherapy is a perfect 12-point match. This did not, and does not, exist for her. So we opted for chemotherapy since she responded so well. However, since the leukemia returned, we now know that no amount of chemo will keep it away, so we have to go with the next best option. Since there isn't a perfect 12-point match, we are looking for the best mismatch. If we don't find someone that the doctors think is good enough, we will look at umbilical cord blood.

Interestingly, the cord blood only has to match at 4 points as the blood has a higher plasticity that will eventually grow to match the host. There is a search going right now for an appropriate match.

Another thing to address is the quarantine phase post-transplant. For the following six months, she will have extremely strict food restrictions and limitations on visitors. Imagine an infant: no immune system, no booster shots, and susceptible to everything. But the baby would have antibodies from the mother's breastmilk and Erica will have nothing. She will only be allowed to be around certain people to minimize chance of infection. We're already trying to devise a way to get a giant computer monitor and webcam set up so she will not be completely without her friends. :) however, we ask that for all those people who want to visit, that we just match it according to her transplant schedule--and we won't know this for some time. For now, we know that the first 4-6 weeks in the hospital trying to get back into remission will be lonely, long, and tough. That is a perfect time to come boost her spirits! As far as we know now, and I do reserve the right to change this, she will be inpatient from about Feb. 11th onward.

Right now, Erica is catching a flight home to SFO on Thursday night. After much persuasion, we have convinced Erica to follow through with her commitment to do a Russian dance at "Med Night" at Fletcher on Saturday. She was worried that she would run into people who do not know about her cancer returning, and also people who do. She was also nervous about how it would appear to others: she has leukemia but she's doing a Russian dance?? and to this, I say, DANCE!! I am 100% in favor of her doing all the dancing she can before having to go back to the hospital.. all in favor, scream AYE!

Also, she will be having a little gathering on Monday night of locals here in Boston who want to say goodbye and send her off with good wishes... not to mention a great time to let people sift through stuff that we are trying to sell/give away/or push! Trying to move all her belongings back to Cali seems to be expensive and unimportant, but I would be remiss not to mention that parting with many of her possessions is emotionally taxing too...

Lots of people have asked me what my plans will be with Erica moving back to NorCal. I don't know. It seems that the overwhelming concensus is that I remain in NYC and finish my degree. Although I recognize the logical and practical side to this decision, my heart is broken to think that I will not be with her to play cards all day or be silly all night or just be together period. I know that I will be back for spring break and long weekends and as soon as school is out, but I must admit it will be strange to read about updates on the blog instead of posting them. But as arrogant as I am in inflating my importance, my Mom is amazing and everyone will chip in as before and I will rest easier. I look forward to the return of Nurse Bossy Bessy and Jamie spooning in her hospital bed with her! Adam already threatened to bathe in Purell to gain entrance to her company and I couldn't be more pleased. I will be jealous of all the yummy food she will have with our family nearby as my aunts are amazing chefs and my Mom IS the meaning of homecooking--well Chinese style.. MMmmm!

Lastly, I'm sorry to all those people whose phonecalls and emails I have not returned as I will be honest: I just don't want to! :( Not yet.. but soon, ok?
Thank you all for the beautiful messages and thoughtful words.. I do hear/read them and they are so special.

Until next posting... peace.

2008-01-31T00:43:00.000-05:00

this is jaci and this is not a happy blog.
deep breathe. hold. exhale.
erica had a bone marrow biopsy this morning after weeks of low counts at the hospital. since this has occurred twice before during her treatment due to her sensitivity of the chemotherapy, the docs were optimistic and only did this as a precaution. the results came back that the leukemia has returned.
as it turns out--and i don't have much information on this phenomenon just yet--but she relapsed with AML, not ALL as she presented with two years ago.. almost to the day... more to follow when i better understand this. however, the plan is that erica will return to california and live with our mom in burlingame. she has to repeat the induction phase, which means she has to go back into the hospital for at least a month. then we cross our fingers and pray that there is a cord blood match since there was no bone marrow biopsy match. after induction, she needs to have a transplant.
i'll be honest, i don't have much energy to write an animated message with details and explanations, but i will--so keep reading as i promise to keep writing. the important news now is that erica is ok. really. i found out in nyc this morning and caught the first train i could to boston so that i could be with her when she found out... i guess that's one of the perks to being in love with her ex-doc. there were some tears, but i'll tell you, this woman is fucking strong! we're making a practical plan and when that's finalized, i'll be happy to share.
one thing: round one was tough. we were alone in boston and i firmly believe that only by the support of the fletcher family, frequent flights from CA friends, immense love from family, and both being cared for by andres did we make it here to a better place. so now that we are on the brink of round two, please please be double aggressive with showing your love! i wish i did not have to ask anyone for more, because words don't describe the gratitude we feel. but i know this will be harder because she's tired of fighting, so close to the end. only one month shy of completing all her treatment....
ok, i'm signing off tonight. peace.

Buzzkill

2008-01-29T22:55:00.000-05:00

There's nothing like mentioning ya got cancer to kill a conversation.

It would make an interesting PhD dissertation for some social psychologist to analyze anecdotal survey data on what people of different gender, culture and age do when someone mentions casually that they are going through chemotherapy. As I meet fresh batches of friends who just think I've always been super skinny with short thin hair, I find myself unsure of how or if to convey to them that this new and related to a prominent aspect of my life: cancer. I mean, in describing my extracurricular activities, don't you think that spending hours at the hospital each week is at least as relevant to understanding me as the fact that I do yoga for two? And, don't you think that spending a year in bed retching and aching is at least as pertinent as the year I spent teaching kids in Japan in shaping who I am today? I am neither seeking sympathy nor would I dream of causing discomfort, but I am an open person who would like to just be who I am without freaking people out.

When I was bald and in a wheelchair, this was easier. The light bulb over people's heads would accompany a facial expression that said "aah, so that's what's wrong with her". Now, most people are just at an uneasy loss as to what to say if I accidentally/casually/purposely mention my treatment experience. Some patients seek to hide their illnesses; I, on the other hand, am so grateful when folks are brave enough to express their curiosity and mature enough to realize that people are not all that they appear to be.

I'm not sure if I'm making much sense in this blog post. I guess what I'm noticing at this stage of this experience is some difficulty in assessing when and how it is appropriate for me to mention my cancer/chemo. When we went around in a class last week each stating something unique and interesting about ourselves that one couldn't read on our resumes, I battled internally over why it seemed expressly taboo for me to joke that I haven't felt my toes since January 2006 (neuropathy). I find it pretty funny. A hunch told me my class wouldn't.

I recently consulted Fletcher's office of career services about when I'm queried in an interview about challenges I've overcome and whether it was appropriate for me to use the fact that I basically earned a master's degree while going through chemo. I'm pretty damn proud of that and think it demonstrates some relevant qualities about me. After giving it some thought, they said to avoid mentioning it. "I would just hate to see their prejudices or fears get in the way of you being hired", they said. And, they're right- if I didn't get the job, I'd never know if it was because they thought I'd be a sickly and therefore unreliable employee. [the only person worse than a recently married woman of child-bearing age to hire is probably a damn cancer patient. sigh.]

One last example of biting my tongue involved being in a friendly group conversation where a woman was telling a hilarious story about how she didn't read the instructions on a bag of "lavender-scented" mothballs, inadvertently exposing herself to dangerous amounts of para-dichloro-benzene. It was funny and in adding to the natural flow of the stories and conversation, I wanted to say- "yeah, that shit is nasty! the gasoline sumps that oil companies buried in my neighborhood growing up actually emitted benzene- which is probably why I got leukemia..." Um, no. Obviously I couldn't say that. Well, I could, but no one wanted to hear that. I can only imagine how the conversation would have ground to a halt.

I know that one of the reasons why I find most of the cancer experience easy to discuss is that I have great hope for remaining in remission. So, really, all of this is not a complaint, but observation.
Still, how do I remain true to myself while still being conscientious of people's comfort zones?

Merry Merry Quite Contrary

2007-12-29T14:18:00.000-05:00

On the first day of cancer, my chemo gave to me, a focus on mortality.

On the second day of cancer, my chemo gave to me, two rubber gloves, and a focus on mortality.

On the third day of cancer, my chemo gave to me, three scars to mend, two rubber gloves, and a focus on mortality.

On the fourth day of cancer, my chemo gave to me, four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the fifth day of cancer, my chemo gave to me, FIVE BROKEN DREAMS. Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the sixth day of cancer, my chemo gave to me, six insurers payin’, five broken dreams! Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the seventh day of cancer, my chemo gave to me, seven kids a’staring, six insurers payin’, five broken dreams! Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the eighth day of cancer, my chemo gave to me, eight blood counts sinkin’, seven kids a’staring, six insurers payin’, five broken dreams! Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the ninth day of cancer, my chemo gave to me, nine shots a’smarting, eight blood counts sinkin’, seven kids a’staring, six insurers payin’, five broken dreams! Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the tenth day of cancer, my chemo gave to me, ten hours sleeping, nine shots a’smarting, eight blood counts sinkin’, seven kids a’staring, six insurers payin’, five broken dreams! Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the eleventh day of cancer, my chemo gave to me, eleven nurses nursing, ten hours sleeping, nine shots a’smarting, eight blood counts sinkin’, seven kids a’staring, six insurers payin’, five broken dreams! Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

On the twelfth day of cancer, my chemo gave to me, twelve friends to sooth me, eleven nurses nursing, ten hours sleeping, nine shots a’smarting, eight blood counts sinkin’, seven kids a’staring, six insurers payin’, five broken dreams! Four funky turds, three scars to mend, two rubber gloves, and a focus on mortality.

barry and me

2007-12-15T10:00:00.000-05:00

Major League Baseball can add me to their rolls.

Of steroid users that is. I have officially begun chemotherapy again after a five week hiatus. Although my body is already reacting more strongly this time around, it is good news that my infection-fighting white blood cells are battle-ready.

and away we go again...

Guam

2007-12-10T19:36:00.000-05:00

so, my uncle bobby called me today. he was very kind but basically echoed what all my family says, that i should rest and not be going to school right now. he invited me to go to Guam, where he has a "lovely apartment" and just relax. he said it's just like Hawaii 30 years ago; calm, beautiful. now, offering that in the middle of finals is just not fair. so tempting... what would you do?

neutropenia

2007-12-01T18:21:00.000-05:00

As many of you know, my chemotherapy treatment schedule is currently administered in three-week cycles. Due to levels of chemicals, how long they take to kick in, how long they take to flush out, how much rest I get plus various other issues, I would describe the schedule in the following way:

Week 1- Sucks.
Week 2- Extremely sucks.
Week 3- Somewhat sucks.

And then the cycle repeats.

This has been the story of my life health-wise for about 48 weeks now. When close friends and family call and say, "how are you?", I can say, "I feel like my usual Week 1" and they know what I'm saying.

So, given this long-standing routine, it is notable that my last Week 3 (or in hospital parlance, Day 15) in-hospital intra-venous treatment was Nov. 7, almost one month ago. This is the longest I've gone "off treatment" in almost two years. The reason my next cycle has been postponed three times so far rains on my toxin-free parade.

The first thing they do when I go in for treatment is take a series of blood samples from which they assess the robustness of my health to make sure my body can withstand the chemo that week. The past 3 weeks, the lab has reported white blood cell counts too low to withstand chemotherapy. Since chemo attacks infant cells as they try to grow and multiply, they can't fight the potential cancer cells without harming my already low white blood cell count. (WBCs fight infection and are muy importante.)

What this means is two things. One, I am very tired, because it takes the body a lot of energy to produce these fighter cells. Think of yourself with a cold or the flu. Two, I need to be very careful about exposure to bacteria. That means avoiding a lot of things I'm already supposed to avoid such as crowded subways, sick/contagious people, raw foods- but actually doing it. But also, I'm not supposed to floss, to shave, or do anything that could lacerate the skin and let in those icky germs that would have a free-for-all while the immune system is out of town.

How and why is this happening? At first, the doctors shrugged and said without concern: "oh, this just happens sometimes when someone has been on chemotherapy for such a long time." The second week, when my counts actually continued to fall instead of rebounding as expected, the doctors began to integrate a second theory: Around the end of October, I, in a week-two-druggy-haze, accidentally loaded my pill cases incorrectly, dosing myself with twice the amount of 6MP per day than my weight allows. I felt terrible all that week, but didn't discover the mistake until Jaci figured it out. This was initially dismissed by the docs as rather inconsequential, but is now figuring more heavily into their hypotheses for my current neutropenia. [One doctor told me, "you know, this medicine is toxic stuff!". Well, NO SHIT, I wanted to say, who do you think you're telling that to? Have I not been questioning whether the treatment actually causes more harm than the disease since this whole disaster commenced?] When the 3rd week of low counts rolled around, it was decided that, if my counts did not display improvement by the following visit (this Wed, Dec.5), they would conduct a bone marrow biopsy to check for some other more serious malignancy.

I reeeeally don't want my bones drilled into this week. I've got finals coming up. I just don't have time for cancer (or whatever else my body is brewing) right now.

love, through time and space

2007-11-16T11:32:00.000-05:00

Gna-boo died yesterday. She went to sleep for an afternoon nap and never woke up. While the whole family struggles with grief and the inevitable confusion death brings, there are few alive today who could hope for a better life or a better death than Madeline Kwok's.

Some highlights (hopefully correct and not those fuzzy guesses that over the years become fact in grandchildren's minds):

-Madeline lived 89 years, although she has been saying she's 90 for the past 2-3 years (because age garners respect and admiration? because she was just rounding up? because in Chinese custom, age begins 9 months prior to birth?)

-She was born in Shanghai in 1918, moved to Hong Kong in 1949, and to San Francisco in 1974.

-She was the matriarch of our family: 5 children, 9 grandchildren, and 6 great-grandchildren-- but all with personalities and partners that make the family seem so much BIGger.

-The day she got her driver's license (in HK), she got in a fender bender and was too scared to get behind the wheel ever again.

-I don't think she worked (for money outside the home) a day in her life.

-She believed in enjoying life, particularly food. She was known to say that you can't eat dollar bills, so money paid for good dining was always money well spent. Of course she loved good Chinese food, but had a special affinity for a fine slice of prime rib too.

-She was a devout Catholic, who in her later years would watch the Mass on TV on Sundays when it became difficult to get to church.

-She loved nature videos, particularly oceanographic explorations.

-She had a weekly mahjong game with other "boo-boos" in her building.

-She always wanted to please others. Even in her last days, she would mumble gratitude to those who came to visit her, eat only to make her caretakers happy, and in general try to ease the sadness and burden her deterioration was causing her children.

I asked Gna-boo about a year ago about her late husband, my namesake, Eric. With the exception of some time in the 1940s when such associations became prohibited, he worked as a distributor for American entertainment companies, such as United Artists. He was a charming, dynamic business man, at ease mingling with movie stars, a global player before the word globalization even existed. He died around 1971, almost 40 years ago. I asked my grandma if she missed him and she did not hesitate, "Yes, very much", she said.

My grandpa Eric died on November 15, 1971. His wife, my Gna-boo, died this year, 2007, also on November 15.

Funeral arrangements will be finalized today. Thank you for all of your messages of comfort and gentleness.

2007-11-13T22:26:00.000-05:00

It is with a heavy and saddened heart to tell you all that Gna Boo/Grandma is fast declining. She has not eaten in 3-4 days with only a few drops of water as intake. She is very weak. She moans and flails her arms a lot and we are sedating her with morphine as well as atavin to sooth and ease her pain and discomfort. She hasn't spoken in days and barely nods or shakes her head. She seems to hear and understand when we speak to her but often there is no response. Once in a while, we get a faint nod. She frowns sometimes and seems to be displeased about something but we don't know what.
This morning when I sat with her, held her hand and kept talking to her, she seems to understand and hear me. When Willy came into her room and spoke to her, she opened her eys and smiled ever so faintly...what does that tell you, eh? We gave her a few drops of water and she took that.
The nurse is coming again today at 1:30pm and we will see what she has to say after she gives her another examination. When she came her yesterday, Gna Boo had a slight elevated temperature so we are giving her liquid tylenol every 4 hours. She can barely swollow but she tries.
Please continue to pray for her. She is a brave lady and despite her frailty and discomfort, she is doing her utmost to ensure we are all okay as well. When we talk to her, we keep assuring her that we are all here and okay.
Jimmy just called me and said he has been with her for the last 20 mins and she is quite out of it and really does not know that he was there.
Will keep you all updated...
Peace and Love
Auntie Judy

Gna-Boo Report

2007-10-14T14:58:00.000-04:00

From my Mom:

Today is Sunday 10/14/07...
Willy called me at 6am this morning and related that Mother is doing very well this morning. As usual, first thing when she wakes up is that she is hungry - a good sign. She had her oatmeal which is what she asked for. When Willy declined the nurse who came in to give her IV, she immediately piped up and said she needed it as she is not eating enough. So, you see, she knows what is going on and what is needed to give her more energy and strength. She is trying harder to eat but she does have difficulty swallowing.
Willy again spent the night with her and Lillian relieved him at 9am. Jimmy just called from the airport that he has been to see Mom and she is looking a lot better, more lucid and smiled when he told her he is leaving for a few days. Bobby is back from Las Vegas last night as did Lil from Chicago. I will relieve Lil at noon. So we are taking shifts so as not to bombard her with too many people at one time. Cousins Annie (who has been there almost daily), Lily and Dorothy also came to see her yesterday and Lily fed her almost half a bowl of Soy milk that she likes. Adelaide and white son Tim also came by last evening with flowers and biscotti. Mom is totally aware of everything and when she is tired, she just closes her eyes, tunes out and rests.
The plan remains that tomorrow hospice will send all the equipment to her place and will set up so that when she goes home, probably either in the afternoon or Tues morning, depending on how well things are finalized at home for her. She seems pleased that she will be going home where she will be more comfortable, being within her familiar surroundings. Her regular maid, Annie, whom she also likes and relates well, will initially be there to take care of her during the day. So, we will see how things go and go from there on a day to day basis.
Will keep you guys all informed. Thank you Jason and Erica for wanting to return to SF immediately to see Grandma but at this point, its best that you guys stay put and we'll keep you abreast of the situation. Robby and JJ both have been to see Grandma when she was in ICU. Even though she was groggy and sleepy then, she was aware who came and smiled.
Peace...
Judy

when it rains...

2007-10-11T11:56:00.000-04:00

i sit in my curtained cubicle in the hospital feeling fuzzy-headed and lost. how did i arrive at my appointment four and one half hours late?

my gna-boo is in a curtained cubicle in a hospital right now too in San Francisco. she is my one grandparent left and she is in intensive care, speaking little, eating nothing. Congestive heart failure, kidney disfunction, levels of this and that and falling down and a stroke (or two!) and doing better, no doing worse, no you shouldn't come, she's gonna weather this one through, no she doesn't want anything invasive, why weren't the ICU nurses watching her, bleeding bump on the back of her head, smiled at news of great and grand-children, lucid, silent.

i feel depressed and impotent. it started before news of my grandma but that sent me into a state of avoidance- of classes, responsibilities, engagements. have i overloaded my schedule, am i moping, self-indulgent? have a recent lowering of medicines been premature? i have had pneumonia for the past month or so, but antibiotics seem to have quelled the chest pains and cold symptoms. this progress, reinforced by specific blood tests and CT scans, seem to confirm that the pneumonia was/is bacterial and not fungal- a good thing. body-sick no. heart-sick.

Madeline Kwok. all of my friends who've met her agree that everyone needs a gna-boo. the sweetest little old lady ever. i'm so scared i'm not going to get to say good bye.

Any Given Wednesday III

2007-09-23T18:13:00.001-04:00

The final installment of this three part series is the simplest. Every time I go to the hospital, before anything else can be done, they must send blood samples to the lab to make sure my levels of white, red, and purple blood cells, magnesium, potassium, myassium, protein, preteen, calcium, ABC, XYZ, CRS, etc are all either good or "expected under the circumstances". This photo flipbook show them accessing my portacath, taking blood and then administering the intravenous chemotherapy into the same port.

This is a Port-a-Cath or as we lovingly call it, a port. There is one just like it implanted in my chest as I type. It grosses me out still sometimes to think about its plastic invasiveness, but it's really quite a convenient little gadget. There are two pin-cushion pads where a special needle has lots of room for error. We all have our horror stories about difficulty finding veins in our arms and hands to access for blood collection/donation, right? Well, when my veins were just about to walk out of the factory in protest, the union renegotiated their contracts and got them vacation time. Technology was brought in via a surgical procedure last spring to implant this mechanism. The tube winds around my collar bone giving it special access to all that fresh blood pumping out of mi corazon- and front row seats to deliver all the poison throughout the body as well.

This is Kecia removing the bandage I had put on at home. When I remember, I put a topical anesthetic cream on the port one hour before show time. Everybody's different, but this seems to help me avoid a good deal of the pain.

I think I've blogged about nature's gift of outward perspective before, but it applies to my port as well as to my general looks over the past year and a half. It's really such a great feature of being human that we can't look at ourselves, save by aid of mirror. Therefore, my self-consciousness about being bald, enfeebled or even having strange lumpy protrusions in my chest has been limited. There are some fashions I will not sport (strapless tops shout: Stare at my weird pectoral tumor!) but mostly the summer found me donning tank-tops and bikinis just like everybody else. Few people mention the port and so I forget about it.

She's using alcohol to clean the site.

That's the fancy needle. Considering it's length, it's remarkable that the pain is insubstantial and the success rate of first-time access nearly 100%.

My nurse verifies a blood return, or, makes sure that the port is functioning well both in and out. She'll take several vials of blood, flush the tubes inward with saline and heparin (an anti-coagulant), and then pinch the tubes shut while we wait for my results from the lab. This waiting period is usually the bulk of the time I spend at the hospital each week- approximately two hours. During this time, I usually eat something from either the hospital cafeteria or the food court. I always plan to study or work, but rarely actually do. Hospital time gets sucked into the black hole of all wasted hours plotted with the best intentions.

I think there has only been one time when I was too sick to get my weekly chemo and it hasn't happened for a looooong time, thank goodness. So, next, the nurse will suit up in a thick protective gown and pull on special heavy-duty gloves. Can you imagine? The crap that they inject INTO MY HEART is so toxic and terrible that those who administer it must dress for a walk on the moon lest it splatter or drip a drop on their skin. I love that.

Another saline and heparin on the rocks, bartender.

The nifty needle has a spring-loaded release mechanism to immediately self-sheath the point upon removal.

By the way, these pictures were taken in July, so your eyes aren't playing tricks on you- my skin does look terrible. One of the things they are always telling me is that my skin on chemo is very sensitive to the sun, but I would scoff and insist that they didn't know MY skin. MY skin rarely burns and always tans. Well, score another one for the medical establishment. In Costa Rica, I got very burned and some of these pictures show the healing process. Still today, the remnants of the sunburn are faintly visible on my legs. Oops.

Et voila! All of that blood, water, and chemical exchange and all I get to show for it is an unnecessary band-aid. They should at least give out suckers. Or toothbrushes.

Signing off Sunday.
T minus 3 days until this is repeated.
And twenty-eight more times after that.

TV X'S 2

2007-09-20T11:22:00.000-04:00

1. A feature on TV last nighton young adults with cancer, including following some around Dana Farber Cancer Institute, my home away from home.

2. A documentary on The Learning Channel. Said Carr, the creator, "People often ask me why I named the film Crazy Sexy Cancer. The answer is simple: to challenge the perceptions, to poke fun and bring humanity to a disease that is still so misperceived and feared. No matter what happened, I refused to be saddled with the isolating stigma associated with cancer. Just because it had changed my life forever, didn't mean that I had changed."
Word.

what a mess

2007-09-15T16:37:00.000-04:00

quoted from a hand-painted sheet on the side of a rural Vermont farmhouse:

Nobody died, when Clinton lied.

the kingdumb

2007-09-13T11:46:00.000-04:00

Dear Mr. Obama,

I just received your campaign's "Iraq" e-mail. As another person who opposed the war in 2003, I respect that you can boast the same. However, I wanted to let you know that I found the e-mail's simplification in saying "the people who attacked us on 9/11 were in Afghanistan, not Iraq" to blatantly neglect the paramountcy of Saudi Arabia's role. Going after the physical perpetrators of terror may be cathartic and important, but going after the money (whether that means through economic, political, or physical means) is the better way to be proactive about terrorism and not reactive. I do hope that future communications to your constituency will better reflect an acute awareness of this reality. Thank you.

Sincerely,

Erica Murray

***

Dear Erica,

I have spoken out against the war in Iraq since before it began.Today, I outlined a plan to turn the page in Iraq and end the war.Sign on to the plan today:my.barackobama.com/iraqplan

The saddest thing about the Bush administration's surge of public relations in favor of the war in Iraq this week is how predictable it has become for them to make their case for war around the anniversary of 9/11.

Five years ago today -- September 12, 2002 -- President Bush made his case for war at the United Nations.

He was wrong. The people who attacked us on 9/11 were in Afghanistan, not Iraq, and his case was built on exaggerated fears and empty evidence.

But conventional thinking in Washington lined up for war. Too many politicians feared looking weak and failed to ask hard questions. Too many took the President at his word instead of reading the intelligence for themselves. Congress gave the President the authority to go to war, and our only opportunity to stop the war was lost.

I made a different judgment. I opposed this war from the beginning. I opposed the war in 2002. I opposed it in 2003. I opposed it in 2004. I opposed it in 2005. I opposed it in 2006. And I introduced a plan this January to remove all of our combat brigades by March 2008.
The time to end this war is now.

My plan for turning the page in Iraq is clear:
remove our combat troops from Iraq's civil war by the end of 2008
take a new approach to press for reconciliation within Iraq
escalate our diplomacy with all of Iraq's neighbors and the United Nations
confront the human costs of this war directly with increased humanitarian aid

Sign on to support the plan now and join the voices calling for an end to this war:
http://my.barackobama.com/iraqplan

Our troops have performed brilliantly, but let me be clear: there is no military solution in Iraq, and there never was.

The best way to protect our security and to pressure Iraq's leaders to resolve their civil war is to begin to remove our combat troops immediately.
Not in six months or a year -- now.

We must get out strategically and carefully, but our drawdown should proceed at a steady pace of one or two brigades each month. If we start now, all of our combat brigades should be out of Iraq by the end of next year.

Show your support for the immediate drawdown of our combat forces:
http://my.barackobama.com/iraqplan

While we change the dynamic within Iraq, we must surge our diplomacy in the region.
We need to launch the most aggressive diplomatic effort in recent history to reach a new compact in the region. This compact must secure Iraq's borders, keep neighbors from meddling, isolate al Qaeda, and support Iraq's unity.

Conventional thinking in Washington says Presidents cannot lead this diplomacy. But I think the American people know better. Not talking doesn't make us look tough -- it makes us look arrogant. And it doesn't get results.

Strong Presidents tell their adversaries where they stand, and that's what I would do. Now is the time for tough and sustained diplomacy backed by real pressure. It's time to rally the region and the world to our side.
Support new diplomatic leadership and my plan to end the war:
http://my.barackobama.com/iraqplan

The final part of my plan is a major international initiative to address Iraq's humanitarian crisis.
There's no military solution that can reunite a family or resettle an orphaned child. It's time to form an international working group with the countries in the region, our European and Asian friends, and the United Nations.

We should increase our support for displaced Iraqis and expand access to social services for refugees in neighboring countries.

It's also time to go to our friends and allies -- and all the members of our original coalition in Iraq -- to find homes for the many Iraqis who are in desperate need of asylum.
As Americans, we must keep faith with Iraqis who kept faith with us and take responsibility for our own actions:
http://my.barackobama.com/iraqplan

I welcome all of the folks who have changed their position on the war over these last months and years. We need more of those votes to change if we're going to change the direction of this war. But if we've learned one thing from Iraq, it's that the judgment that matters most is the judgment that's made first.

I opposed this war from the beginning, and I want to bring this country together to end this war now. The American people have the right instincts on Iraq. It's time to heed their judgment.
We have the power to do this -- not as Republicans or Democrats, but as Americans. We don't have to wait until George Bush is gone from office -- we can begin to end this war today, right now.

It's time reclaim our foreign policy. It's time to reclaim our politics. It's time to lead this country -- and this world -- to a new dawn of peace and unity.
Thank you,
Barack Obama

Any Given Wednesday II: Bone Marrow Biopsy

2007-08-30T14:39:00.001-04:00

The bone marrow biopsy is performed on me every 3-4 months. It is done to check to make sure there are not cancer cells in my bone marrow. And, just in case you're wondering, I remain in remission with a big fat ZERO leukemic cells. 18 months and not even a blip on the cancer radar screen.

Bone marrow is the spongy stuff found in the center of most of our bigger bones. For these biopsies, they usually take from the hip. They alternate between my left and right hip each time. For this procedure, I lie flat on my stomach.

Ready? Me neither.

Injecting the lidocaine actually creates a pocket of liquid under the skin (seen here). It burns a lot but obviously I can't imagine this procedure without it. They usually use a few syringes of it.

They insert anesthetic as deeply as possible. I can usually only feel the needle tap-tap-tapping on my pelvic bone as they numb the area.

Here, Adriana (my wonderful 7-months-preggers physician's assistant) is cutting a small slit into my skin. Apparently, this is her special trick to allow easier entry of the big needles. It also seems to allow the area to heal faster.

She leans her weight on this, twisting back and forth, and just bores down into the bone. This part hurts a bit; there is intense pressure.

Next is the worst part- they insert a needle within the "drill" and suck up an aspirate sample. There is this horrific jolt of sensation down my leg when this is done. Honestly, pain is so much easier to take than deep strange nerve reactions.

The marrow of me.

The drill just chillin' in me. I guess they all went for a coffee break or something.

Then, they do the actual biopsy, which is basically sucking up more marrow and bone, but it's done with a different needle. Where her thumb is pressing is the new needle going into the core.

This is the bits of marrow and bone from the 2nd needle.

Andres used to sing that Diana Ross song- "I'm coming out! I want the world to know, Got to let it show..." when he was done with a spinal tap or a bone marrow biopsy. The relief that the needle was coming out and it was over combined with his singing The Supremes in an Argentine accent usually had me laughing by the finish.

All done.

By the way, I've noticed bone marrow biopsies on House, Grey's Anatomy, and Scrubs and would like to dispel a little of the fear of pain they seem to exaggerate. This is not something I'd choose to do in my spare time or for kicks, but when this procedure could save the life of a bone marrow match, there's no question that it would be worth it. And you'd only have to get this done AFTER you'd already tested as a match for someone-- testing is a pain-free mouth swab. Have you been tested yet?

Any Given Wednesday

2007-08-23T18:38:00.000-04:00

Since the day when I find myself most prostrate before god, the day I contemplate my mortality and pray most fervently is a different day than most Americans, I thought I'd invite you my sabbath. The reasons why Wednesdays find me feeling most small in the scheme of the cosmos and the fates is that I spend three to six hours every Hump Day in the cancer ward getting various treatments, usually simply liquid chemotherapy injected into my chest portal.

What kind of visuals does that meager description conjure for you? If I didn't know what it looked and felt like, I think I'd find it rather hard to imagine. So, for both your entertainment and education, I have, with the help of a few friends, photographed three of the procedures I may experience on any given Wednesday. Some people find me very strange and not a little morbid to be intrigued by needles entering my own body, but, personally, it makes me feel a little more in control. Also, if I leave it to my imagination, I've found that my idea of what must be causing that crazy pain is often scarier than the truth. The 3 photo "flip books" will be of 1) a lumbar puncture or spinal tap, 2) a bone marrow biopsy, and 3) a run-of-the-mill CBC and chemo injection. Here's numero uno:

Lumbar Puncture or Spinal Tap
August 22, 2007

These are the vials into which my cerebral spinal fluid will be collected. CSF is a clear fluid that circulates in the space surrounding the spinal cord and brain. It protects the brain and spinal cord from injury by acting like a liquid cushion.
I get spinal taps in order to both test my CSF and to put chemo medicine into my CSF. I used to get them very frequently, but my schedule for LPs now are every four months. These days, I rarely see results from my various tests and procedures to tell you the truth. Instead of celebrating every cancer-free test result, we just consider no news to be good news.

I sit on the side of a patient bed with my legs dangling and drape my body over a small adjustable table. I suppose the rounding of my lumbar region makes the vertebrae easier to delineate. After thoroughly cleaning the area, the doctor or physician's assistant will use their hands to feel deeply between my vertebrae, aligning with my waist, etc. A special plastic sheet is stuck to my back, I believe to prevent the various fluids involved from getting on my clothes. After a site is selected, they inject lots of lidocaine, the "pinch and burn" of which is really quite excruciating.

Needle is inserted into spinal column. This part can take several tries as they search for a good extraction place. When these occurred every few days or so during the initial induction phase in the hospital, I would have to get this done under fluoroscopy, to obtain real-time images of the internal structures.
This "hunt and stab" routine is my LEAST favorite part of all my treatments because sometimes the needle hits weird nerves or other places which cause jolts down my legs or shocks up my back. Everything in my body tells me that I should NOT be playing around with this vulnerable space, but what can I do?

After a juicy spot is found, the "plug" needle within the needle is removed to allow fluid to flow outward.

Collecting the precious nectar. Drip, drip, drip.

While they're there, chemotherapy is injected. You know, two birds with one stone.

Finished!

O Canada!

2007-08-18T17:16:00.001-04:00

For those of you who have been following Jim and Jesse's incredible journey hiking from Mexico to Canada this summer, they have finally arrived! Here is their final update, including the total money raised for the Dana Farber Cancer Institute and the Cammy Lee Leukemia Foundation.

***

Our final post! (To see pictures associated with this post, please visit our blog: http://www.marrowtrek.org/blog.php.)

Hike Vitals
Miles hiked to date: 3000
Miles to go: 0
Days since hike started: 116
Location: Waterton Lakes, Alberta, Canada
Showers: 14

Fundraising Update
We raised nearly $35,000 from more than 200 people -- it was a moving display of support from our family, friends, and some whom we have never met. Thank you to all for the donations, care packages, and letters of suport we have received during our trek. We are very honored.

NOTE: For those that are supporting our charities through a per-mile pledge, we will be emailing you in the next few days with instructions on how to complete your donation.

Trek Update
We reached the 49th parallel marking the Canadian border on August 13th, 116 days and 3000 miles after leaving Mexico. We couldn't have scripted a better ending to our trip. Our week-long victory lap through Glacier National Park was some of the most majestic scenery either one of us had ever seen.

Our trek through Montana (and Idaho) did not begin with such promise. The first 500 miles of trail strictly (and often ridiculously) adhered to the divide, following jeep roads and ATV tracks as they meandered up and down (and up and down and up and down) the dry, rolling hills (labeled by another hiker as "PUDs", for "pointless ups and downs"). Thick haze from the summer's many fires often obscured views, and the lack of diversion and dimension caused the days to pass slowly.

Then we reached the Anaconda-Pintler wilderness, and we left behind the staid hills for more rugged terrain, rivers and lakes of alpine country. We continued to move quickly, weary of the rapidly growing fires in the north. Our fears proved well founded: By the time we reached our second to last resupply in Lincoln, fires had closed more than 100 miles of the remaining trail.

We settled on a route that preserved our long sought wilderness experience by tiptoeing around more minor fires on the western edges of the Bob Marshall Wildernes. During lunch one day, we sat on a high ridge and watched the dark, billowing smoke of trees bursting into flames a mile away.

Our detour extended into the southwestern corner of Glacier National Park where we left the fires behind (though not the smoke) and entered a glacially carved landscape of dramatic peaks, deep lakes, and beautiful tree-line passes. It was the type of scenery we had dreamed of on the CDT, but which had proven somewhat elusive. We swam in deep pools beneath towering waterfalls, ate trailside thimble berries, and took long lunchtime siestas. Mike Payne, our good friend from San Francisco, joined us for the last 50 miles, providing new perspectives and fodder for our daily trail banter. Jim's mom and her husband met us at trails end with food, comfortable beds and a welcomed ride home.

We are now spending our days working off our hard-won fitness as quickly as we can with a regimented diet of milkshakes, steaks, soft beds, and golf. Jesse will soon wake up to the imminent responsibilities of his September wedding, and Jim will face the challenges of finding a job and a place to live. But right now, it is time for another nap.

recalibrated, illustrated

2007-08-18T17:03:00.000-04:00

Artineh's Bachelorette Party at Malibu Wines

I'm on a self-imposed mildly-unsuccessful non-drinking phase.

What a hard worker! (Jamie on her work cell while in Catalina.)

Newlyweds: Anai y Roberto

Anai, Uma, me, Marie, Erik (newly and happily divorced: uma y erik)

The Empire State Building.

Mom, Jaci, Andres y me at Katie's company (Rosenblum's) event.

Uncle Jimmy y me with Palace of Fine Arts & the bay behind.
(This is the actual view from their balcony!)

reCALIbrated

2007-08-14T20:04:00.000-04:00

Almost two weeks in California are to blame primarily for this blag. That, plus I fear the clearer my mind becomes- as the fog of chemo continues to clear as I wean myself off various pills and peripheral medical agents- the less confidence I have that anyone reads this thing. During my trip, however, so many people cooed in ear that they do read my blog frequently that I am recommitted. Also, I think I need to stop this new budding concern about who's reading this- who cares! I'm going to use that old public speaking tool and imagine ya'll NAKED reading this. Ha ha, look! there's my professor letting it all hang out! and whoa- there's matt in his skivvies! and- oh snap, dude, uncle willy, please put something on!
My Mama has been printing out these elegantly-bound books of all these ramblings and comments, so I'll consider this my own private journal of "Two Years in (Ti)bed(t)" (sigh. without Brad Pitt) filled with lame jokes such as that, the likes of which make my sister wonder aloud how on earth we are even related...

what a preamble. jeez.

so, cali.
a luscious time was had. there need not be a reason to visit friends and family, but I planned this trip to attend a friend's bachelorette party. given that my sweet, just finished her PhD, about to marry her high school sweetheart, friend, Artineh, doesn't drink alcohol nor does she find the idea of strippers in the least bit tempting (who does?), we threw her a circus. a party with lots of junk food, games, and friends. then, we went for a picnic at this gorgeous winery in malibu under clear blue skies and giant oak trees. because i cannot miss certain treatments, I am unable to attend her actual wedding (which I'm pretty sure would have been more like an anthropological adventure to participate in a 400-person traditional Armenian wedding!) but want to wish her and Sev all the camaraderie, affection, and adventure their lives can handle. congratulations, Art!

one of the other special treats was going to Catalina Island with Jamie and Uma. It was Uma's "first slumber party", her first night spent away from John and home since the aneurysm. Catalina is a great place for an ice-cream cone and, if you're lucky (as I was in 1997), a swim with dolphins. So other than dumb-luck and mint-chip, why waste your time when you can go to Cinque Terre? or Baja even? Wonderful to spend time with Jamie and Uma, but I'll leave Catalina to those who like two-foot wide fake beaches and overpriced hotels...

takers? anyone?

another special occurrence this trip was getting to meet ROBERT, anna's elopemate. he's a sweetheart who seems to love my girl Anna with all his kungfu might- plus, he makes an awesome breakfast skillet (topping last night's bbq with over-easy huevos... mmmm). i can see why she always calls him her little panda bear.

as for other tall women with their little loves, Andres got to meet the Kwoks this weekend in San Francisco. For those of you who don't know yet, (have you been living under a rock?) Jaci is and has been for quite some time now, dating dr. andres sirulnik. if you've been paying attention, the name will be familiar because he is and has been for quite some time now, my oncologist. He was there that first night in the ER as every hemo-doc was paged in for what they feared was going to be a very bad and sad night for some girl with a off-the-charts white-blood-cell count. He was there (as they jammed a needle in my groin to begin immediate blood cycling to get those bastards out) at the head of my cot instructing me to look at him (not down at my thank-god-i-shaved lower half) and making me laugh despite the palpable fear and confusion all around. These days, he makes me laugh at the dinner table several nights a week when I visit him and Jaci in their cute apartment near Fenway. And now, he's even met my extended eccentric most-excellent family in San Fran. Naturally, his convivial personality and do-anything-to-make-Jaci-smile MO led to a wonderful weekend. He's been like family to me since I moved to Boston and it's nice to envelop him into ours on the w(b)est coast too.

and then there's the fact that if he wasn't the sparkle in my sister's eye, i'd probably have killed him by now for all the frickin misery his damn chemotherapy causes me. in L.A., I had severe back pain from "coming off the steroids"--which makes me sound like a Bondsian addict experiencing withdrawal symptoms-- that left me prostrate on jamie's bed while she converted from clark kent into super nurse. here's how it goes (or: All You Need To Know About Cancer Treatment):

benzene exposure
traumatic catalyst
leukemia
chemo
back pain
oxycodone (painkiller)
nausea (particularly jolly on a ferry boat)
constipation
constipation meds
you know what comes next
etc etc etc

anyway, now i'm back in boston enjoying a second-hand cigarette wafting up to my window from my neighbor. ha ha ha! i laugh in the face of nicotine and tar! i'm way ahead of you wusses!

boston has the funny quality of being very comfortable while you're here, but possessing few to no reasons to miss it when you're gone.

even so, it's good to be HOME.

B to the A to the R A C K

2007-07-25T07:43:00.000-04:00

we all need a theme song.

if health care reform makes YOU warm, check this out.
http://www.youtube.com/watch?v=wKsoXHYICqU